Just Breathe

Anthony's Story

2011-09-06T07:50:00.000-07:00

Anthony Gene Trupiano's Story

Anthony's life began with an emergency c-section. Previous to that, I noticed decreased fetal movement in my last trimester. My obstetrician ordered several non-stress tests but each one came back fine. The last one, they decided to also have an ultrasound conducted and noticed that I only had 20% amniotic fluid. So that day I was admitted into the hospital and was to be induced the next day.

During the induction, my blood pressure became dangerously high ,and do not really remember too much after that - fortunately both my husband and sister filled in the blanks.

Anthony's began to destat and they decided to go ahead with a c-section. During the operation, Anthony did well, but they almost lost me. My blood pressure began to plummet and they had to bring me back.

After I came to, I asked what we had and asked how he was doing. He was great!! He just needed a little pass of oxygen, but other than that he was fine. What I find ironic is that his agar scores were 9, 9 and 10 and he had no problem breastfeeding. He was on the small side, 5 lbs. 4 oz., but the doctors believed that was due to the decrease amniotic fluid. They also noticed that I had cysts all over the placenta. They could not explain that. I still do not know what that all means.

He soon gained weight. By one month of age, he was already weighing 10 + pounds. The only problem that we soon saw was his platelets, red blood cell and white blood cell count were dangerously low. We had to keep on coming back each week for blood draws until he was three months of age. At the last doctor's appointment, my pediatrician said that if this blood draw comes back low again, she was going to refer us to an oncologist. Luckily, it all fixed itself. Don't know why, but luckily it did.

Started to notice around six months, he was not making the milestones that normal children do, so my new pediatrician wrote a script for physical therapy. We began that and he was making great progress. We also saw a neurologist who believed he may have Spinal Muscular Atrophy. So we had blood drawn. At around nine months, right around Christmas 2001, he contracted RSV. He had a hard time clearing the mucous from his nose and lungs. Something just did not seem right so we took him to the local emergency. There they x-rayed him and said that it spread into pneumonia. We were admitted. During a routine blood draw, he began to turn blue and they called a code. My husband (who is a teacher and a coach) was at a tournament. I was all alone and worried my son was going to die. It took them a hour and a half to bring him back. He was now intubated!! They cleared up his RSV pneumonia, but we still did not have the blood work back and I had to fight with Athena Diagnostics about getting the results - we finally received the results of the SMA test which came back negative. I was very happy, but bewildered why he was still unable to come off the ventilator. It was going on three weeks at this point, and his pneumonia finally cleared up. Unfortunately, he contracted another infection and we continued to stay in the hospital for an additional 26 days. We wanted him to come home without the ventilator is at all possible since we did not know that he had SMARDS. We transferred his care to the University of Michigan for additional therapy and the possibility of getting off

the ventilator. It was not to be - he was trached and we finally came home after an additional 35 days in the hospital. We could not wait to come home. A total of 82 days was exhausting. I lost 30 pounds, got a herniated disk from standing so much ( I stayed by his bedside for 15 hours a day without sitting), and also got the flu as soon as we were home. So exhausted, but thought the worst was behind us.

Now I had a mission to find out what was wrong with Anthony. SMARDS was not a diagnosis in 2002 for us. I contacted doctors through the MDA, Cincinnati Children's Hospital, even the Mayo Clinic but no one could tell us anything. He got sick several more times where we had to stay in the hospital for two months at a time. It was heart wrenching. The last time was when his gastric tube was placed. It began innocently enough with a standard cold that developed into a serious lung infection. He stopped eating, not enough to sustain him, and through the night (I sleep in his room at all times, but this one night did not place in pulse oximeter on) I woke up to find him seizing , his eyes rolled back and blood everywhere on his face from biting his tongue. We had to call emergency ; when we got him to the hospital, they told us that his blood sugar was five. It should be between 100 and 120 for kids like him. The doctor said we are so fortunate we did not lose him right then and there. Now we had to see if anything happened in his brain from the lack of oxygen. He had a pet scan and they said that his basal ganglia did have slight damage, but we would have to wait and see if he would return to his normal function (for him). Luckily he came back to his normal self within a week.

We also endured a stay whereby he had fluid on his lung (a whooping 3 liters). The doctors were amazed that his saturation only went to 90 the entire time. When we were at the hospital for that stay, they did a full electrolyte panel and CBC. They noticed that his Vitamin D, Calcium, Sodium, Phosphorous, and Iron were either elevated or low. The one we had to be concerned with was his ferritin. Ferritin levels measure the amount of iron in the blood, his was 12,000 the normal is 200 max. The most any known cases in medical books was 700 but Anthony's was 1714% higher. They would have to check his bone marrow to see if he had hemochromatosis. He did not and the doctor could not explain why his number were too high. The only thing they did notice was that he did have the bone marrow of an 80 year old; probably due to his lack of weight bearing.

I read about a lab in England were they tested blood for a disease now known as SMARDs1. I asked my neurologist about it and we had to have our insurance ok the testing. It was $650 to ship the blood and $1729 for the actual test itself. We did not have the money for that and luckily our insurance did pick up the cost. It took a full 6 months to get the test results back. When we did, it was a slight relief. I knew of SMA but not SMARDs and the MDA was not familiar with it either. I worked again to find out more information and found more information overseas than here in America. We are so behind the times when it comes to new discoveries.

Unfortunately, for Anthony we have seen his abilities decrease as his gotten older. He was able to eat orally, pick up objects with his hands, roll-over, kick his feet, sit with a little help, but he is unable to do those things. The only consolation I have is I did find out that as long as we keep his lungs healthy,

he should live fairly long, because the brain, eyesight, hearing are usually not affected in SMARDS children. He has been very healthy, (knock on wood) for three and half years. I keep him away from most people during the winter months of Michigan. He only sees his nurses, and me and my husband. If anyone is sick they are not allowed anywhere near him. During the summer we take him a few places-we try to find places where there are horses. He just loves horses!! He also loves trains!

I feel so very blessed that he has survived this long, we almost lost him three times in his short life. I do not know what the future holds, I only pray that Anthony is part of it for a very long time. I would not know what I would do without him.

Andrea M Trupiano

Logan's Story

2011-08-23T19:34:00.000-07:00

"A good mother thinks about her children day and night, even when they are grown. A good mother loves her children in a way that they will never understand. A mom will be there for her children when no one else will. A mom would take a bullet, stand in front of a train, and ask God to take her instead of her child"

Daniel and I met and fell in love in 2009 .After a year of dating we found out that I was pregnant we were scared and excited all at once. I had a wonderful pregnancy all my test were normal. We were told all is well and were expecting a healthy baby boy. On November 24, 2010 our son Logan was born. I cannot explain the love that I felt for our beautiful boy, it was instantaneous. After he cleared his entire newborn screening test we were sent home with a clean bill of health. I was so excited to embrace my new role as a mother but I had a lot to learn. Thank God for Family support!!

After having him home for a few weeks my family and I had noticed some small abnormalities things like: constant cooing, weak cry, gas, but sort of blew them off or thought they were his "normal". I took him to the pediatrician for his newborn screening and his first month checkup but she felt most of the patterns he had were relatively normal and he was eating, sleeping and growing. As the weeks progressed we were heading into Christmas and the New Year we were moving and my Husband was getting ready to go to Chicago for training for his new job . We had a lot going on... it was crazy!!! After the first week of training my Husband came home for the weekend and was playing with our son he had noticed that when he would cry it appeared to be weak and pathetic. The previous day my mom had mentioned his constant cooing .I was staring to wonder but he was eating, sleeping, normal diapers and normal color. The next day he wasn’t eating as much his appetite decreased and he was lethargic. I thought perhaps in all the chaos and it being cold and flu season perhaps despite our best efforts maybe he was coming down with a cold. Later that evening we had planned to go to my in-laws for dinner with the baby while visiting Grandma had noticed that he was having difficulty breathing. THAT WAS IT!!! I called the advice nurse and she advised us to get to the hospital immediately. We whisked ourselves to the emergency room and were quickly brought back where they began breathing treatments and oxygen. I held my baby helplessly as they worked on stabilizing him. My husband and I feared the worst.

It was January 16, 2011 my Son and I rode the ambulance as my husband followed us to Children’s Hospital Oakland. Our Son was struggling and we were terrified as we watched the nurses and doctors busily work. They ran sooo many blood test and cultures on Logan when the test came back normal they were baffled. They kept on trying to figure out what was wrong. They ran x-rays and found the position of his stomach was abnormal and they planned surgery to fix it. But still his breathing was a problem. They also noticed he had some muscle weakness. They kept asking us our family history and as far as we know it were relatively normal. They had suspicions that it may be couple different genetic disorders and after running some test... We finally were told February 24, 2011 that our Son, Logan had a genetic disorder called Spinal Muscular Atrophy with Respiratory Distress. S.M.A.R.D. = Spinal Muscular Atrophy with Respiratory Distress. SMARD is a neuromuscular condition causing weakness of the muscles. It is the second anterior horn cell disease in infants in which the genetic defect has been defined. SMARD1 is not linked to the SMN1 gene locus on chromosome 5q13 (classic SMA), but is caused by mutations in the IGHMBP2 gene on chromosome 11q13. Despite a substantial overlap in clinical features, the phenotypes ofSMA versus SMARD1 can be distinguished.

In SMARD1, the predominating symptom is a severe respiratory distress due to a paralysis of the diaphragm. Most patients present [show symptoms] at the age of 1 to 6 months with respiratory failure and progressive muscle weakness with predominantly distal lower limb muscle involvement. Sensory and autonomic nervous systems may also be involved. Early involvement of the diaphragm and predominance of distal muscle weakness clearly distinguishes SMARD1 from Type 1 SMA. Essentially, in SMA1, symptoms manifest in reverse order. Infants with SMA1 will become floppy due to weakness of the proximal limb muscles and assume a frog leg position before they suffer from respiratory failure. In contrast to SMARD1, SMA1 infants have intercostal recessions and develop inefficient respiration due to paralysis of intercostal muscles.

In conclusion, similar to SMA, both parents must be a carrier. How is SMARD different than SMA? First, the defective gene in SMARD is different than the one causing SMA. Additionally, the predominant SMARD symptom is severe respiratory distress due to involvement of the diaphragm muscles. Respiratory problems are generally the first symptoms.

With SMA- roughly 1 in every 10,000 children are born with this disease.
With SMARD- roughly 1 in every 1,000,000 (if that) are born with this disease.
1 in 40 people are carriers of the SMA gene.
1 in 50,000 is carriers of the SMARD gene.

We had a “family Meeting “at the hospital to discuss our options.neonatologist, pulmonologist, nutritionist. He has 6-7 primary nurses. We are constantly amazed by Logan's sweet disposition and personality. He is sooo BRAVE! During our stay at the hospital we have had to make many hard decisions and our Baby has had a battery of test.We have come a long way and we have learned a lot!!

This situation we never could of expected ourselves to be in. To get married, have a child, husband graduate from college, holidays, move, start a new career, have your son be diagnosed with a genetic disorder, all in less than a year of marriage.For a time my Husband was the only one working so I could be with our Son at the hospital. However, for financial reasons in June 2011 I returned back to work part time. I now split my time between work and family.I still go to the hospital daily and I plan to until our Son comes home.My family has been a tremendous help financially and emotionally during this tough time . We are very appreciative for all the love and support we have received from our family,church,community and Children's Hospital Oakland.

Respectfully submitted,

Danielle and Daniel Terborg

Maddison's Story

2011-08-16T09:56:00.000-07:00

Maddison was born a healthy 7lb 13oz on the 6.8.08,she was perfect.

When the midwives checked her over they noticed that maddison had positional telapese(club foot)but reassured us that a lot of baby's are born with this and that it would correct its self with a few visits to the physio.

We took maddison home the next day,she fed well,slept well, perfect little baby,what i did notice is that maddison had the littlest cry,i have 3 older children so i knew something wasn't quite right.i spoke to my health visitor but she wasn't concerned and said all children are different.

At this point maddison was 6 weeks old and was on her second visit to the physio for her feet,i mentioned to the physio that the movement in her feet had almost stoped and she agreed,she rang round the hospital to try and get a ped doctor to come a review maddison,but none of them would.She sent us home and said we would hear from her when she had arranged for a ped doctor to see her.

We went home quite puzzled and scared,but maddison seemed to be doing fine and was thriving, so i waited to hear from the physio.

A week later a letter came though the post, saying a neonatal consultant would see her,i was confused as Madison wasn't born early,so i rang Maddie's physio and she said that he was the children's doctor that would see her.

i took maddison to see the consultant and he wasn't worried at all about her,he said she looked perfect,but he said he would review again to make sure i had no other concerns.

between the time from the 1st appointment to the next one,maddison feet and toes stoped moving completely, plus she wouldn't bare any weight on her legs.i told the doctor when we saw him again, but again he said she is just a bit slower then my other children,and he discharged her.

When maddison was about 4 months old she had what seemed to be a really bad cold,she wouldn't sleep or feed and was really struggling to breath,i took her to the GP and they sent her to the hospital.

when we got to the hospital they said she had bronculitis and needed a bit of oxygen and a ng tube.after a few days she picked up and they let her go home.

she was doing ok in till she was 5 and half months old,this was January 2009.Then she started with the same symptoms as before poor feeding,struggling to breath.I took her back to GP and again sent her straight back in to hospital,this time they sent a note saying xray on arrival suspected phmonia.when we got there the doctors refused to give her a xray and said its just broncitis again,they put her on a ward and ng feed her and oxygen again.After a week of being in hospital maddison was getting no better and i was starting to get mad,i asked for a different doctor to review her.as soon as he saw her he sent for a xray straight away,and in fact she did have phnomonia.

she had 7 days of antibiotics and they sent her home.

When we took her home she was still very weak and still struggling to breath.we was at home for 3 weeks when she started getting ill again.

This was 16th feb 2009,back in accident and emergency.one nurse came into to asses her,i could tell by his face something was wrong.

he went to get a different doctor to look at her,i asked what was wrong and he said her pattern of breathing was the opposite way to a normal persons breathing,meaning when she breaths in her diaphragm was going to wrong way so she wasn't inflating her lungs right.

maddison was put on a ward again,this time she looked really really poorly.

She had a really bad night that night and in the morning she looked terrible,you could see all her ribs with effort of breathing.

the doctors on the ward asked the main doctors on intensive care to come and see her,they did a blood gas and said it was high,they took my baby into intensive care.

There they did a chest xray,they told us her diaphragm was high on the right side,and it was stopping her lung open,and that's why she cant breath.

They put her on a ventilator to try and re open her lung,after a few days there was no change,so they chose to operate on her diaphragm to tighten it and pull it down.they was till telling us that this is probably congenital and after the op hopefully she will make a full recovery.

After a few hours of surgery her lung had re opened and they she came off the vent,things were looking up.

Maddison went back to a normall ward the ext day,she was still on oxygen and was still needed to be NG fed.

One doctor came to see us over the next few days asking lots of questions,she was a neurologist.she was mad with the other doctors for not referring her before.she was asking things like were me and Maddsions dad related,what was maddison cry and cough like,she was looking at her feet and her reflexes.The doctor asked if she could do a few test and we agreed.

maddison stayed the same for the next 8 weeks,still in hospital,still on oxygen and still needing help feeding.

i started to notice that she was starting to gag when they were NG feeding her,i voiced my concerns,but like normal they took no notice.

In till when it came to feeding her she stated gagging and going blue,they called the intensive care doctors,they came and bagged her round to picu and put her on a vent again,a x ray shown that her NG tube was in fact in the wrong place,and she had aspirated into her lungs.

The neurologist started doing loads more test e.g never conduction studies,muscle biopsy's,lumbar punchers,blood test.

Maddison went back on to the ward,this time they kept her on high dependency unit.After a few weeks maddison took ill again,influenza this time,she was ventilated for 2 weeks.but again she pulled though,my strong little fighter.

back on hdu some of the results started to peace together,her nerve conduction shown problems as did her muscle biopsy.

her neurologist said her muscle biopsy looked like she had something called SMA1,then i had never heard of it.the blood came back negative for sma1.

Then the mention of SMARD1 started to come around,every one kept telling me its not going to be SMARD1 shes to strong,even other neuro doctors didn't think it could be smard1.

Then on may the 20th 2009 the day i will never forget,Dr chow came to us on HDU and took us to a side room and gave us the news we were dreading,SMARD1 positive,it felt like my heart was ripped out, that my head was spinning a million miles a hour.

I ran out the room and just grabbed my baby and held her tight,i was in total shock and despair.

the next few days was a blur,i stayed at the hospital with her the whole time.

A week after Maddisons diagnoses at 3am in the morning the nurse that was looking after maddison rang me in my room at the parents unit in the hospital,maddison had taken ill again and they was taking her back into intensive care.

walking up the corridor seemed like a endless walk,not knowing what she was going to be like when i got there.

Even though maddison had been in picu 3 times before,but this time it was different,this time i knew she might not get better.

After a few days they wanted to try her off the ventilator,the took the tube out at 7pm by 1.30am her blood gases started to go high so they called the on call intensive care doctors.

They came in and put the tube back down,they sat us down and gave us some horrible choices,do we let her live and put a trachy in and ventilate her or let her go the natural way.For me it wasn't natural for a 10 month old baby to die.so for us there was no choice,maddison was not going no were.

the following Monday maddison went down for trachyostomy,plus she had a G tube to as they told me she wouldn't swallow again.

From that day in June 2009 she thrived,we had to learn all her cares e.g cough assist,chest physio,trachy changes,vent training ect.

When Maddison was 1 year old,she started to sit and started to try taster foods.

On the 19th December,a few days before Christmas we took maddison home,almost 11 months after we took her in to hospital.

Weve been home 18 months now and maddison as done fantastic,she has learnt to roll,suffle around the floor,eats all foods,talks and the biggest thing is she as had time OFF her ventilator for over a hour a day. she is so happy.

Maddison starts main stream nursery in september,she is so clever the teachers say she will top of the class.

We are so proud of our little solider.

Maddison as 24 hour care.

Learn of SMARD

2011-08-16T09:32:00.000-07:00

I am learning everyday more and more about the horrible disease that took my daughter. I am meeting new people and seeing how many more know of this disease. Seeing the lives that are dealing with this every single day. I want to show others. I want others to learn about this. Learn the stories of these children. Spread the word yourself. In order for there to ever be a cure, treatment or more help for this disease we need help. If I was a millionaire I would give my money to The Jackson Laboratory and beg them to spend every hour in the lab doing research on this disease. Maybe someday I could do that! But in the meantime- I ask for your help. Help in spreading the word. Help in donating a few dollars. Help by giving your support to fundraisers. Everything helps.

I have had a couple guest bloggers who have told their story. I want to continue this. Please keep checking in and reading more. Read about these little lives. Read about their everyday. Read about what SMARD means to them...

If you have any questions please ask!

MRW Live Laugh Breathe 2011

2011-08-16T09:25:00.000-07:00

I don't have tons of pictures this year. I had like 3 photographers last year so I never worried about taking a single photo. This year I left it up to Ryan. Love that man but he doesn't take many pictures.

He got a few of the entertainment, balloons, etc.

I want to thank EVERYONE that came. You have no idea how much we appreciate your support.

We raised over $1000 and all money raised goes straight to The Jackson Laboratory for SMARD research. It will make a difference. It will get us closer to finding a cure.

Thank You everyone!

Thank You

Today!!!

2011-07-22T12:21:00.000-07:00

Its today!
I sure hope everyone can make it.
There will be the silent auction, raffle, 2 bands, belly dancers, Polynesian dancers, treats, bounce house + so much more!
Come with your family for a relaxing night under the stars.
The entertainment will be great and you will be helping find a cure for this horrible disease.

It will be at Woodland Park in Farmington Utah
300 South 200 East

I map quested the directions to get there so just click HERE and enter wherever your coming from!

5 Days!!!!

2011-07-18T14:02:00.001-07:00

5 Days!!!!
This Friday is our Live, Laugh, Breathe event and I couldn't be more excited.
It will be at Woodland Park in Farmington Utah.
5:30 - 9:30 pm
$2 entrance fee per person
Bring a blanket and picnic
There will be entertainment for your kids as well as for all you adults
We have lots of treats available for purchase
We have an ipod to raffle off
The silent auction will take place from 5:30 - 8:30 pm
.....all items need to be picked up before the night is over
Please bring all your friends and family.
All proceeds will be donated to The Jackson Laboratory for SMARD research.

SMARD Guest - Dakin

2011-07-02T10:40:00.000-07:00

Didn't you just fall in love with Presley?

I know this little man will melt your heart as well.

I first saw Dakin through his Mum's blog before we knew Makenzie was even sick. I thought he was a doll. I never ever thought I would soon have so much in common with this family. He has a wonderful story and I really admire his family.

Meet Dakin

Dakin was born a seemingly healthy baby, but at three months of age could suddenly no longer breathe.  He was lifeflighted to Dallas, given a tracheostomy, and sent home three months later with no answers as to why.  Finally, he was diagnosed with Spinal Muscular Atrophy with Respiratory Distress (SMARD), a rare, untreatable and incurable disease.  A disease that steals a child's ability to breathe on his own, as well as walk and in many cases eat or even smile.

For three years we have dealt with the hand Dakin was given, trying our very best to give him the best and most normal life possible.  We take him to restaurants, to the park, to church and playgroup. He has gone to a rock concert, met a head of state and later this year we are planning a trip to Disney World.  He plays, sings, counts in French and Spanish, and is the most vibrant, intelligent and vivacious child you would ever meet, despite his limitations.  But for those three years we have privately struggled with the fact that we could do nothing for him.  Nothing.

Until now.  Promising research at the Jackson Laboratory may be able to lead to a treatment for Dakin and other children affected by SMARD.  For the first time in three years we have some hope.  Hope that Dakin could dance on his own feet at prom, unencumbered by a ventilator.  Hope that he could go scuba diving if he chose.  Hope that he could pull all the toilet paper off the roll when no one is looking.  Hope that he could just do what he wanted to, whenever he wanted to.

One thing I have learned about life is that it is so much more than walking, or even breathing on one's own.  Despite his label, Dakin is a fighter who has continually laughed in the face of debilitating disease.  And you can help him continue to do so.  Please help forward the Jackson Laboratory's SMARD research by attending the MRW Live, Laugh, Breathe event.  Or if you are unable to do so, please consider making a donation to the lab.

Help us continue to hope.

Read more about Dakin HERE

SMARD Guest - Presley

2011-06-20T21:36:00.000-07:00

You have seen what SMARD has done in our life. What the out come was in our situation... but there are so many more stories and so many other children effected by this horrible disease. I wanted to give you a closer look at what this is doing to other families. What their life is like. I have a few very special guests to introduce you to and our first is someone that melted my heart the moment I first laid eyes on her.
You will love her too.

Meet this very special, very beautiful, very inspiring little girl named Presley.

Written by Presleys incredible Mum:

Presley will be 3 years old in July. She is a very happy, spunky, silly little girly girl! She is so smart and so patient! she inspires so many who know her because of her strong spirit and silly happy outlook on life! We found out Presley had SMARD when she was a little over 2 years old (so last fall). We did not know anything was wrong with Presley til she was 6 months when we discovered she had weak hands and feet. We had done lots of genetic testing but never could find what she had. Strong and determined, Presley hit all of her milestones-though she worked harder than most to get there! She was even walking with a walker and starting to take steps on her own! When Presley was 19 months old she got sick with RSV and went to the hospital where things got bad fast. To make a really long and awful story short- we spent from February-May in Primary Childrens trying to get her breathing right again. In April we discovered her diaphram was paralyzed and we ended up doing g-tube surgery, got her trached, and scoliosis surgery all in a months time. She smiled through it all though! She gives me my strength! After her back surgery she had a hard time standing and since then she has been in a wheelchair. She now drives her very own pink powerchair everywhere and is loving it!! She has to be hooked up to a ventilator 24/7, and uses a cough assist machine and a suction machine to keep her lungs clear since she cannot cough anymore. She also is fed by a g-tube now. I hate what smard has taken from her. She tells me all the time, "Presley walk all by-self". Breaks my heart. I want so bad for there to be a cure or treatment in her lifetime. This disease is progressive and it makes my heart ache to think of her getting weaker over time. I want her to get stronger! I want her to breathe again! And eat again! And walk again! I never want anyone to have to go through this with their child. I never want anyone else to lose their children to this awful disease. I have hope that we will see a treatment one day! But even still, Presley is just a normal little girl who breathes a little different! :) She loves barbies and her friends and going to the park! She loves to get her hair done and nails done and she dances in her wheelchair! She is so fun to cuddle and we all love her squishy cheeks!! And she definitely can make us smile all the time!!! Me and my husband always go to bed giggling at things she has said during the day! She is our inspiration!

Read more about Presley HERE

MRW Live, Laugh, Breathe

2011-06-07T09:32:00.000-07:00

The fundraiser is coming together more and more.

Some of the great things you have to look forward to:
- Bounce houses
- Kenzie Boutique
- Snow Cones
- Cotton Candy
- Polynesian Dancers
- The band End of Fall
- Balloon release
- Farmington City Fire Department
+ SO much more.

This is just a taste.
I would like to reach out to all of you asking for your help.
We are going to be raffling off some items. I have collected a couple amazing things but we don't have enough to fill at least 3 baskets. We are asking for anything. Gift cards, kid products, large items, small items. If you know a company that would be willing to donate would you please let me know? I would be happy to contact them and arrange everything, I just need to know who!

We are now collecting donations through our pay pal account. You can connect through the link on my sidebar.

Remember 100% of all money raised will be donated to SMARD research. To help find a cure for this horrible disease. We need help. We need fund. We need to end this.
and we will, with YOUR help.

LEGGING*S

2011-05-18T08:18:00.000-07:00

In the midst of our Fundraiser we are still going to promote our Baby Legs Project...

You remember all about that right?

Okay so maybe you don't or maybe you are new... Either way... here is the story again...

Since Makenize Passed away in December 2009 I have been determined to continue to make a difference in her name. To show the world how amazing she is and that she is truly an inspiration. To show everyone a different way to look at life and this world. I want to do something that will help other children in Kenzie's situation feel loved, feel comforted and know they are not alone. I want them to know angels are with them. The children's hospital is a different place. The people are different, the environment is different the spirit is different. Unfortunately many families walk out those door without the most important part of their life with them. To many people have to look death in the eye. To many people have to experience mass amounts of suffering. These children are going through so much. Whether they have a terminal disease, a trauma or a mystery diagnosis. They are living a life most will never experience. They are fighting and they are fighting hard. When I started this project I said my goal was 150 leggings. I thought Ehh.. Ill be able to donate a couple, a few people will enjoy them and it will be a way for others to know Makenzie. My goal then increased to 1500 leggings in the 2010 donation.

We ended up donating 1831 pairs of adorable baby leggings to Primary Children's Medical Center in SLC Utah.

My goal is to simply help every child I can at PCMC to feel some peace and comfort and bring even a little smile to their day. These leggings represent hope to me. They represent love far beyond what anyone here on earth could give. They represent happiness. .... Quite a bit from a pair of socks right :)

Kenzie Baby Leggings was created to honor her but its grown into honoring everyone else as well. The amount of support I have seen through this project is overwhelming. Its empowering. Its inspiring. To see everyone come together.

So about these leggings...Whats great is you can not only wear them on your legs but your arms, your hands or feet... They will keep you warm- seriously those rooms are freezing.

and

They are so freaking stylish!

Through the month of October I will be collecting donations for our delivery on

December 13 2011.

They can come in the form of knee high adults socks that I can make into leggings or already made baby leggings. On December 13 2011 they will be donated to Primary Children's hospital in Salt Lake City Utah.

*Here are some examples of the adult KNEE high socks that can be donated. They need to be fun/funky/different patterns or solid colors (no boring white please) *For these socks, I was planning on sewing them myself along with some family members that have offered to help but if you would like to help sew them- please email me and ill send you the instructions and patterns. (I promise, its really easy) *You can buy these socks at numerous places. I get them at target because they are only $2. *If you will be sending these socks or money donations please have them to me no later than November 1st so I can have enough time to sew them. You can email me for my address. * If you are going to sew them yourself please have them to me no later than December 1st so I can have enough time to package them.

*These are the already made-nothing else to do but stick those cute things on a pair of fat, plump, or skinny legs. *You can buy these at target, walmart, kid to kid, any baby boutique or online at http://www.babylegs.com/. They are a bit more expensive (around $8-$10) a pair but there is no work to be done and they fit for quite a bit longer than the homemade leggings.

I have received a few notes from some amazing families that have received a pair of the leggings from last years donation and you wont believe how much it means to them. We need to keep this love and support going.

Please pass this along. Please post it to your blog if you could. We want to collect more leggings than we did last year!

and that is a BIG number.

I know there were others around the country that donated leggings to their local children's hospital. We want to give every child something to smile about. Something to make their day a little brighter. If you would like to donate to a Children's hospital in your area instead of sending them to us. I would ask you to include our little letter with each pair of leggings. If you have any questions please send me an email anytime. Ill answer as quickly as possible!

livingformrw@hotmail.com

Second Annual Live, Laugh, Breathe Event!

2011-05-16T08:46:00.000-07:00

I haven't wanted to write much because there are so many things still up in the air with the event. BUT we are starting to get things in order and everything is starting to fall into place.

I learned last year not to put my all my heart into something because more often than not, people tend to back out last minute. AND I hate disappointing all of you

We had a planning meeting a week ago and got some great ideas and plans going.

You already know we will be doing a concert in the park.

It will be at Woodland park in Farmington Utah.

July 22, 2011 (which is a Friday)

We have several performers we are very excited about and know you and your family will enjoy.

Its very family friendly. For all ages so make sure you bring your baby and your grandparents.

Its a bring your own picnic/dinner on a blanket kind of thing

but we will have lots of candy, goodies and treats you can purchase there.

Makenzie Boutique will definitely be there again for all you boutique lovers. We have some fun things to be sold already and I'm sure more to come.

One of the most popular attractions last year was the bounce houses, the cotton candy and snowcones... Well my very good friend JASON at Utah Bouncy Houses has graciously donated his services AGAIN! This guy is awesome.

So this means when your little ones get a little restless they can go jump out their energy!

There are so many other details I want to share but I have to hold back for a bit.

Remember to mark your calendars so you can make it!

Bring your friends, your family, your neighbors...

I promise it will be an amazing evening!

I know for us Utahans its a holiday weekend and many of you might be heading out of town. If you still want to help we have our pay pal account set up if you wanted to make a donation for SMARD research! Remember all proceeds from this fundraiser go straight to the lab. Straight to the scientists that are working extremely hard to find a cure! With your help... It will happen.

UPDATE... MRW LIVE LAUGH BREATHE

2011-04-16T08:35:00.000-07:00

Oh My...

I have been wanting to update this for a while but we have had one thing after another come up and I didn't want to update without really knowing what to update!

For all of those of you who have been hitting the road or the treadmill to prepare of the 5k. Good for you! But. There will not be one :(

Instead we are doing a

CONCERT IN THE PARK.

I cant give to many details until all the money, permits, etc is in order just to make sure nothing falls through the cracks but there you go.

PLEASE save the date.

July 22 2011.. We moved it up a day so that it will interfere with all the 24th of July festivities less. I hope you can make it. I hope you bring your friends and family. I promise it will be amazing.

If you are interested in helping- being a volunteer- please let me know. I have put together a little committee so it would be great if you would like to join.

email me at livingformrw@hotmail.com

Makenzie's 2nd Annual Live, Laugh, Breathe EVENT!

2011-02-03T09:54:00.000-08:00

HOLY 2011!

So its now February and my planning has yet to begin. Okay well lets be honest with ourselves. I have been planning since before the last Makenzie Event in July 2010 :)

But I have yet to start making the calls. Eeek. Ill get on that ASAP!

So my plan....

Are you ready?!

We will be doing a 5k run/ 1k walk!

So lace up your running shoes and get ready.

Yes this includes me!

I have a lot of work to do. BUT. I will be doing the 5k! My first 5k ever!

Don't laugh. I have participated in many runs but I always take the shortcuts and never make the full 5k run entirely. fewww! This will be great though. AND we will be running for a great cause.

I will soon be posting about our plan, the goals, the place, the day, the time and any other details that need to be communicated!

I cant wait.

Let the count down begin!

The FINAL Leggings of 2010

2011-02-03T09:51:00.001-08:00

I am SO very sorry. I didn't post about the leggings final delivery because I didn't think anyone was reading this blog! OKAY.... That will end NOW. Go HERE to see the final outcome on all your hard work with the leggings. We did far better than I ever imagined. I am so honored to have you all as friends. Even if we have never met you are in my heart and I adore you! Thank you for spreading joy and the memory of Makenize.

Long Overdue.... MRW Live Laugh Breathe Event.

2011-02-03T09:49:00.000-08:00

Customize a free photo slideshow

Leggings Party #1

2010-10-31T19:17:00.000-07:00

October 19th we had our first Leggings Party.

With the help of some amazing family we folded, stuffed and finished sewing 600 pairs of leggings! AND we were no where to being done. We ended up stopping because we ran out of the stories we are putting in the bags! We will be having another little party coming up this next month where we will finish getting everything put together. Its been amazing to see the out poor of love and support these leggings have brought. They make me so happy. I can only imagine the little legs that get to fill them.

You are all the reason for this.

Thank You!

If you are still interested in donating leggings please get them to us no later than Thanksgiving. It takes more time to put these things together than we expected. We want to make sure everything is put together perfectly before we take them to the Children's hospital. Please email me for instruction, an address to send the leggings to or any other questions you might have.

A Special Donation

2010-10-31T18:23:00.000-07:00

A couple weeks ago I came home to find this on my porch.

Thank You Thank You Thank You!!!!

The person who organized this amazing delivery is someone very special to Ryan and I. She was the paramedic that took Makenzie from IMC hospital on November 17th to Primary Children's.

I sat upfront with the sweet driver who kept trying to reassure me things would be okay and keep my mind distracted. She sat in the back with my baby. She kept her happy and made her comfortable. This sweet girl has kept up with us and our family. She has been an amazing supporter and we love her so much.

This was donated by Gold Cross Ambulance.

The Leggings Project

2010-10-11T11:58:00.000-07:00

This girl

became famous at Primary Children's Hospital because of these things

Since Makenize Passed away in December I have been determined to continue to make a difference in her name. To show the world how amazing she is and that she is truly an inspiration. To show everyone a different way to look at life and this world.

I want to do something that will help other children in Kenzie's situation feel loved, feel comforted and know they are not alone. I want them to know angels are with them. The children's hospital is a different place. The people are different, the environment is different the spirit is different. Unfortunately many families walk out those door without the most important part of their life with them. To many people have to look death in the eye. To many people have to experience mass amounts of suffering. These children are going through so much. Whether they have a terminal disease, a trauma or a mystery diagnosis. They are living a life most will never experience. They are fighting and they are fighting hard.

When I started this project I said my goal was 150 leggings. I thought Ehh.. Ill be able to donate a couple, a few people will enjoy them and it will be a way for others to know Makenzie.

My goal is now 1500 leggings and my goal is to simply help every child I can at PCMC to feel some peace and comfort and bring even a little smile to their day. These leggings represent hope to me. They represent love far beyond what anyone here on earth could give. They represent happiness.

.... Quite a bit from a pair of socks right :)

So about these leggings...

Whats great is you can not only wear them on your legs but your arms, your hands or feet... They will keep you warm- seriously those rooms are freezing. and They are so freaking stylish! Through the month of November I will continue to collect donations. They can come in the form of knee high adults socks that I can make into leggings or already made baby leggings. On December 13 2010 they will be donated to Primary Children's hospital in Salt Lake City Utah. We currently have around 1000 pairs of leggings. We still need 500+ to reach our goal.

*Here are some examples of the adult KNEE high socks that can be donated. They need to be fun/funky/different patterns or solid colors (no boring white please)

*For these socks, I was planning on sewing them myself along with some family members that have offered to help but if you would like to help sew them- please email me and ill send you the instructions and patterns. (I promise, its really easy)

*You can buy these socks at numerous places. I get them at target because they are only $2.

*If you will be sending these socks or money donations please have them to me no later than November 1st so I can have enough time to sew them. You can email me for my address.

* If you are going to sew them yourself please have them to me no later than December 1st so I can have enough time to package them.

*These are the already made-nothing else to do but stick those cute things on a pair of fat, plump, or skinny legs.

*You can buy these at target, walmart, kid to kid, any baby boutique or online at http://www.babylegs.com. They are a bit more expensive (around $8-$10) a pair but there is no work to be done and they fit for quite a bit longer than the homemade leggings.

LUCKY for us, http://www.babylegs.com has graciously partnered with our project and is doing a very special thing! If you mention Kenzie's Baby legs project and enter code BLKenzie at checkout, you will receive a 10% discount on your order--- and for every pair of leggings you buy for our project they will match it! That means if you order 3 leggings- they will send me 3 more leggings = 6 leggings! This is a huge huge huge blessing. We will be able to collect so many more leggings and make this an even bigger donation to the hospital for these amazing kids.

If you have any questions please let me know, you can email me or leave a comment with your email address. Thank you for helping us get where we are, almost 1000 pairs is simple amazing! We are soo very honored and blessed.

You are all making a difference!

Balloons

2010-10-03T19:21:00.000-07:00

whats the story behind these? just balloons right? not to us. when kenzie was in the hospital this was one of the first times i realized how incredibly strong she is. when a friend sent her balloons, i brought them in her room, she wouldn't take her eyes off them. i gave them to her. she held them. a little girl losing all control over her body. grabbed those balloons and wouldn't let go. wouldn't take her eyes off them. i could see a miracle that day. to see the strength she held in that little body. i was amazed. since that day we always had balloons in her room. they made her happy. she wouldn't take her eyes off them. the night she left us. we sent her balloons. we continue to send her balloons. its something we can still give her. its something where we can feel connected. we write on them, kiss them and send them to her. for her birthday i ordered over 1000 balloons. a group blew them up throughout the whole day. everyone got one. we sent them off. to not only makenzie but to every other angel that lost their battle. it was amazing.

The Cake

2010-10-03T19:00:00.000-07:00

The story of the cake. That's the main thing right. Every first birthday is about the cake, the mess, the first taste. I wanted to give that to my daughter. I wanted to give her the best cake I could. But. I didn't know what I would do. I wanted something great. It was her first birthday cake. I cant really bake and I definitely cant cook and I couldn't think of spending money on the cake because we were spending so much on everything else. I finally figured we wouldn't have one. Then I got an email. From this amazing girl. She won a cake. From Sprinklebelle. She said she wanted me to have that cake. She wanted Sprinklebelle to make Makenzie a cake. Couldn't believe it! Then Jill from Sprinklebelle said she wanted to make an even bigger cake and make it just how I dreamed. She made her fairy cake. She made it better than I dreamed. I couldn't believe my eyes. I took it home. We ate it on her first birthday with her family. I can just imagine how happy Kenzie was to have that be her cake. Who else has this cake for their 1st birthday? I love it. I'm in love. Thank you Ali, Thank you Jill. For the best thing I could ever ask for.

LEGGINGS leggings LEGGINGS

2010-09-14T10:59:00.001-07:00

wow.. Its been a while since I have updated this blog. Ill get better! I have so much more to show you in regards to Makenzies Event back in July. Ill get the rest of the pictures posted ASAP! I want to get everyone geared up and excited for our Leggings Project! Its growing faster than I can keep up with it. I have received HUNDREDS of leggings in the last month and more coming in by the week! Remember back when I said our new goal was 1000 leggings?! Well I think we are going to keep that goal but hope to actually collect 1500 pairs! I need your help! Tell your friends. Tell your family! Tell your neighbors! Lets get those leggings! Remember I will be donating them to Primary Children's Hospital in December. They will be wrapped pretty with a little story about Makenzie as well as a little story about all of you and how amazing you are to have donated so many leggings. They will be given to all the kids there. I hope to collect so many that they can give them to any child that has to stay there for months to come! Thank you for all the donations I have received so far. I havent been able to get an accurate count because over 500 pairs are being embroidered with MRW on them. We are waiting to get those back and we will then get a better count. SO... Lets go everyone! Get collecting! babylegs.com is still having that amazing deal!

Leggings

2010-08-16T10:14:00.000-07:00

THE LEGGINGS!!! I have received a few donations in the last couple weeks so I'm not sure my exact number right now but last count was 524!!! We have beaten our goal and still have half a year left! WOO HOO! You are all amazing! What would I do without my amazing friends... Thank You SOOO very Much! I have some exciting news. www.babylegs.com is doing a very special thing for us! If you mention Kenzie's Baby legs project and enter code BLKenzie you will receive a 10% discount on your order--- and for every pair of leggings you buy for our project they will match it! That means if you order 3 leggings- they will send me 3 more leggings = 6 leggings! This is a huge huge huge blessing. We will be able to collect so many more leggings and make this an even bigger donation to the hospital than we could dream. If you have any questions please let me know. Again- Thank you for helping us get where we are. We are soo very honored and blessed. You are all making a difference!

Makenzie's Live, Laugh, Breathe Event!

2010-08-13T10:17:00.000-07:00

It was a Success!!!!

It was seriously amazing. We had so much love and support it was overwhelming. I apologize if I never got to talk to you or hug you- I really wanted to but I was seriously a mad women the whole day. So sorry! How rude of me. I still love you though and hope you will forgive me :)

Well I know you have all been checking in DAILY if not HOURLY to find out our results. I am a huge slacker and was nervous to post the final $$$ for fear something would happen and I would have more or less than what I was expecting. The reason being- We still were handing out silent auction items. So here it is...

DRUM ROLL PLEASE...

$15,080

No I'm not lieing. We beat our goal by $5,080... WHOO HOOO!

You all rock!

I cant tell you how amazing this is. You have made a difference to so many children. You have given hope to so many parents. It may be this donation that gives them the answer to a cure.

I hope you all know how thankful I am. From the bottom of my heart I could never thank you enough. For everything.

Those who came, bid on items, volunteering your time, volunteering your servies, donated money, bought treats, bought tickets, rode in the motorcycle ride, sent donations, told their friends and family about the event or prayed for us.

It was because of you!

Thank You Thank You Thank You.

Ill post more pictures soon but for some fun updates and pictures click

HERE and HERE

You Dont Want to Miss This - Part 10

2010-07-14T09:54:00.000-07:00

ITS WEDNESDAY!

I'm just panicking a little.

okay--- a lot!

3 days

1-2-3 DAYS!!!

I cant believe its almost here.

Of course we are experiencing the usual hick up. You have to expect that with everything. I'm just well.... over dramatic and tend to fall off my chair wailing like its the end of the world when we hit the smallest speed bump. I think things are coming together.

We have so many amazing friends and family rallying together to help make this all that it will be. I know everyone has put so much effort, love and dedication into this event and I am so blessed!

I cant begin to Thank everyone for being so amazing.

SOOO guess what- As of right this minute... We have 89 silent auction items!

and we are still adding more! I have a few coming today and tomorrow and I still need to pick up a couple. You seriously have to see some of this stuff!

We have awesome kid baskets, man baskets, girlie baskets, home baskets, garden baskets, sport lover baskets and so much more. There are items that start as little as $5...

You have to come check it out.

LEGGINGS

2010-07-14T09:42:00.000-07:00

So Its been a few post since I blogged about my other project- THE LEGGINGS!!! I have received a few donations in the last couple days so I'm not sure my exact number right now but last count was 524!!! We have beaten our goal and still have half a year left! WOO HOO! You are all amazing! What would I do without my amazing friends... Thank You SOOO very Much!

I have some exciting news.

www.babylegs.com is doing a very special thing for us!

If you mention Kenzie's Baby legs project and enter code BLKenzie you will receive a

10% discount on your order--- and

for every pair of leggings you buy for our project they will match it!

That means if you order 3 leggings- they will send me 3 more leggings = 6 leggings!

This is a huge huge huge blessing. We will be able to collect so many more leggings and make this an even bigger donation to the hospital than we could dream.

If you have any questions please let me know.

Maybe we should just throw out another goal # ...... ....... ...... 1000??!!!

I don't think its too outrageous since you have all been totally out of this world, jump up and down, unicorns and glitter kind of amazing!!!

Again- Thank you for helping us get where we are. We are soo very honored and blessed.

You are all making a difference!

You Dont Want to Miss This - Part 9

2010-07-12T13:26:00.001-07:00

Other Items in our Silent Auction:

- car wash gift cards -

- night out on the town complete with limo service and dinner -

- dinner for 4 made by your personal chef for the night -

- beautiful custom jewelry -

- gift cards to bakeries -

We have so many activities planned! We have been working non stop for the past couple weeks.

and now

We are 5 days away from THE Event!!!

If you live in Utah-

Tune into Channel 2 News on Friday Morning.

You will see me + family + friends + entertainers all for

Makenzie's Live Laugh Breathe Event!

5:00 - 8:00 AM

Don't miss us! DVR us! Its a chance for you to get a sneak peak at whats in store for Saturday!

Ride for a good cause and honor MRW

2010-07-09T13:52:00.000-07:00

Do you ride a motorcycle or know someone that does?

You better join in on this pre event ride!!!

A great friend of mine set it up! Its going to be amazing!

Kenzie Boutique

2010-07-09T08:17:00.001-07:00

Just to give you an idea what will be offered at this amazing little boutique...

** Fairy Station--- you can buy fairy wonds, fairy halos and get sprinkled with glitter **

- TONS OF CRAFTS -

- There are magnet boards - - necklesses- - magnets- - capes (for superheros) -

- furniture- - dresses - - crochet items - - pictures - - flower clips - - head bands -

- braclets - - watches - - wood letters - - home decor -

- yummy treats - - shirts -

The prices very. Again we can only accept cash or check. You can buy these items, you will not bid on them. Everything is homemade. Everything was donated. You are just going to go nuts over this stuff!!!

You Dont Want to Miss This - Part 8

2010-07-09T07:57:00.000-07:00

1 week from tomorrow.

I think I'm gonna pee my pants a little bit :)

hehe

Its coming so fast. I have a million things to do just today. Seriously I have a list 5 pages long!

eek!!!

I know it will all be worth it. You will all have fun and you better all come.

Don't make me begg!

SOO I know you all could use a night away.

I know I could.

So here is a list of all the night/weekend stays you can bid on.

Anniversary Inn -B&B

Best Western near Bryce Canyon

Comfort Suites in Ogden Utah

Hibernation Station in West Yellowstone

The Ritz Carlton - San Francisco California

You seriously cant miss this! We have lots of other fun things planned that you don't want to miss. Just to give a little more information:

- We will only accept check or cash - There will be a leggings donation box if you have leggings you would like to drop off - There will be a SMALL program and a balloon launch at 7:00 pm - Raffle and Silent Auction both end at 7:00 pm so you can take your things home with you. - If your not present when the silent auction ends we will still get in touch with you and get you your items - You do need to be present for the raffle. If your not present when we raffle off the wii we will draw another ticket. - We will start right on time and have to end right on time. - There are bathrooms, a playground and tons of room to run around.

Its coming up!

2010-07-06T08:58:00.000-07:00

11 Days!!!

Please tell your friends and your family.

You will not be disappointed!

For those of you that live in Utah---

Listen to all clear channel radio stations for my PSA that I recorded last week!

It will be played on all clear channel radio stations throughout the day until our event!

Let me know if you hear me!!!

You Dont Want to Miss This - Part 7

2010-07-02T08:52:00.000-07:00

Have you ever made a quilt? Forget that, Have you ever sewn anything? I have attempted. I have failed. Seriously! I don't have the sewing skills at all. Well I have been blessed to have several AMAZING quilts donated to Makenzie's Live, Laugh, Breathe Event's Silent Auction. That means- YOU can purchase one of those homemade works of art for yourself! I am so excited I cant even begin to tell you! Well one of the many quilts that have come in is from the amazing Material Girls Quilts in Utah. I have been in contact with Nadine who is just a doll and she helped get this put together for us.

You have to check out the amazing quilt HERE.. Scroll down a bit and you will see which one is being donated to us. Its beautiful. I love it! I want to keep it.

Seriously people- I'm bringing my check book. Ill be bidding. So should you! We have so many amazing things for EVERYONE!

Another donation I received the other day was from a place called Wild Arrow.

By a raise of hands who has a husband- or you yourself- are ridiculously obsessed with hunting- esp bow hunting? (i raise my hand)

Well the amazing team at Wild Arrow has donated:

2 shirts

2 hats

1 certificate for a bow tune up

1 punch card for 10 visits to their range

and a Hoochie Mama elk call.

My husband was jealous.

He wanted to sneak a few of these things for himself so I promised him he could bid on it.

So this is me now begging all of you to outbid him! I don't want to buy him anymore things for hunting for at least another couple months. He has everything!

15 more days! 2 weeks from tomorrow!

If you have anything you would like to donate to the silent auction please let me know ASAP. I need to collect everything July 5th!!!

You Dont Want to Miss This - Part 6

2010-07-01T08:41:00.000-07:00

More items in our silent auction!!!!

a Daron Williams basket- which included a signed basketball and picture!!!

a picture by Ally Brynn

(this amazing artist made a special family portrait for us and I adore it)

Photography session with J5 Photography

Concert tickets to Kingsbury Hall

An amazing framed temple picture from Poppy Seed Projects

beautiful marble cutting boards from European Marble and Granite

Just to name a few...

If you have something to add to the silent auction I need all

donations by July 5th.

Please email me for more information!

Money- Mulah- Prices!

2010-06-30T08:31:00.000-07:00

Admission: $8 per person

-children 1 and under are free-

that includes 1 meal ticket and 1 voucher for the fishing pond.

With the meal ticket you will get

+1 hot dog

+1 drink

+1 bag of chips

= Dinner!

With your admission that also includes all the amazing activities you can handle.

There is the bounce house, clowns, magicians, princesses, obstacle course, bean bag toss, balloon animals, balls, balloons for kenzie, scales and tails, UFO's, information booths, football toss, bubble machine, play ground, live music, tattoo station, dancers, Pinata and so much more!

The other costs are:

snow cones: $1

cotton candy: $1

face painters: $2

popsicles: 2 for $1

fishing pond: 2 for $1

raffle: $10 for 5 tickets

silent auction - depends on items.

kenzie boutique - depends on item.

there will be everything from jewelry, fairy wands and halos, crafts, hair bows to scentsy products.

spread the word- come help support an amazing cause.

Lets raise that $10,000 for SMA research and then some!!!

You Dont Want to Miss This - Part 5

2010-06-28T13:53:00.000-07:00

So have you ever seen those amazing dancers that shake their body in ways you could only dream? I remember the first time I ever saw one- I was at the mall around Christmas time and they were putting on some holiday performance. These belly dancers came out and stole the show. Ill never forget the one girl I wouldn't take my eyes off of. She was amazing. She made the dance look so easy and so beautiful. I love dance! I sure wish I had any kind of rhythm.

WELL GUESS WHAT?!

At Makenzie's Live, Laugh, Breathe Event we will have a special performance by the

AMINA BELLY DANCERS!

This is going to be an amazing performance.

You will not want to miss them.

They will perform from 7:45 - 8:30 pm.

Come out, Grab a seat, Pull up a blanket and ENJOY!

LeGGinGs

2010-06-28T13:44:00.000-07:00

If you haven't heard....

I just packed and sent all our baby leggings that we have so far to get embroidered.

AND. the final count as of June 27 2010 is...

...drum roll please...

494!!!

hello! yes, can you believe it?! i surely cant.

we are a mere 6 leggings away from our SECOND goal. If you don't remember, my first goal was 150. HAHA. I laugh at my old self, thinking my peeps wouldn't pull through and totally surpass my expectations of donating a few leggings. nope. you all rock. you came through with flying colors and donated a whooping 494 pairs of leggings!

but don't think we are stopping. ill be collecting through September. lets blow that 494 number away by getting many more than that!

Thank YoU Thank YOU THANK YOU

to everyone who donated.

This is going to be so amazing.

Remember- December 13 2010 ill be donating all these adorable leggings to

Primary Children's Medical Center.

There will be a flood of babies and little kids who will be sporting this fashionable attire.

I just cant wait!

You Dont Want to Miss This - Part 4

2010-06-23T08:38:00.001-07:00

We have been blessed with some amazing donations for our silent auction. You seriously have to come just to check out all the amazing things you can bid on. Here is a SMALL list of some of the things we have:

2 all day passes to Lagoon

$50 gift certificate to Salt Lake Running Co.

Gift certificate for a dozen cookies from the AMAZING Dough Girl

(if you have never tried one of these cookies- promise me you will, they are heaven in your mouth)

All Day passes to CHERRY HILL

Gift basket worth $100 from Babinskis Baby Boutique

A gift certificate worth up to $1000 at

EDGE products

(all you truck owners will drool over this)

A nights stay at the RITZ CARLTON Half Moon Bay in sunny California

WITH a round of golf included!

If you wish to donate something to our silent auction please contact me at livingformrw@hotmail.com.

We are still in need of more items and would love anything!

I need all silent auction items by July 5th.

We have a serious count down now!

Only 24 more days!

We are in need of volunteers!

If you would like to volunteer that day please email me.

You can help for as little or as long as you would like.

Cant wait to see you all!

You Dont Want to Miss This - Part 3

2010-06-17T08:02:00.000-07:00

You really REALLY reaLLy don't want to miss...

We have the privilege of having one of Utah's best magicians perform at Makenzie's Live, Laugh, Breathe Event. When I found this amazing artist I knew we needed him.

...and...

he graciously accepted!

So get ready, get prepared and come see The Magic of TIMOTHY

Crazy? Perhaps, but Timothy is definitely someone who has a lot of fun doing what he loves most, entertaining! His light hearted performing style, comical manner and repertoire of incredible magic and illusions is guaranteed to have the audience in stitches and amazement! He presents a magical form of entertainment that is amazing, humorous and truly unique.

From 5:30 - 6:15 pm you will be amazed by

The Magic of Timothy!

I know ill be sitting front row so I don't miss anything!

If you would like to have Timothy at your party go HERE.

You Dont Want to Miss This - Part 2

2010-06-16T10:15:00.001-07:00

Have you ever heard of this company???

OMG- Its amazing.

I usually am not into creepy crawlers but these all look so amazing and friendly that I cant wait to meet them all!

Scales and Tails

provides entertaining reptile shows year round and they have graciously offered to come to our event and put on an amazing BIG show! There is going to be tons of fun surprises you will not want to miss. Check out some of the amazing animals they have...

They will be at Makenzie's Live, Laugh, Breathe event from 4:00 - 5:15 pm.

Make sure to come early to grab a good seat!

Volunteer Pizza Party

2010-06-09T15:06:00.000-07:00

Remember.... THIS Saturday June 12th from 6:00 - 7:00 PM is our Volunteer Pizza Party!!! If you would like to volunteer at Makenzie's Live, Laugh, Breathe Event please come this Saturday for a mini party. It will give me a chance to meet all of you, let you know what you will be doing at the event and eat some pizza. We will be having it at the same park as the event in July. We will have a couple balloons at the park by the pavilions so you can watch out for them. This is an open house so come and go as you please. It will not take long to sign up and find out what you will be assigned. I cant wait to meet you if we haven't already met and I cant wait to see everyone I know. Lets just hope the weather holds up and we are not sitting in a rain storm. If so- the show will still go on and we will be there in rain gear. Please email me if you have any questions. If you cant make the pizza party but still would like to volunteer please email me your name, number and the time you would be available to volunteer. Ill get you on the list and let you know later what you will be doing.

Shepard Park

760 W Shepard Ln Farmington, UT 84025

Directions coming from the South heading North Merge onto I-15 N. Take the US-89 N exit, EXIT 324, toward I-84 E/SO. OGDEN. Merge onto US-89 N via the exit on the LEFT. Take the UT-106 exit, EXIT 396, toward SHEPARD LN. Stay STRAIGHT to go onto N US-89. Turn SLIGHT RIGHT onto SHEPARD LN/UT-106 E. 760 W SHEPARD LN is on the LEFT. Directions From North heading South Merge onto I-15 S via the ramp on the LEFT toward SALT LAKE CITY. Take the PARK LANE exit, EXIT 325, toward UT-225. Turn LEFT onto PARK LN. Turn LEFT to take the US-89 N ramp toward NB FRONTAGE RD/SO. OGDEN. Stay STRAIGHT to go onto N US-89. Turn SLIGHT RIGHT onto SHEPARD LN/UT-106 E. 760 W SHEPARD LN is on the LEFT.

You dont want to miss this- part 1

2010-06-08T13:08:00.000-07:00

From now until the event I will be featuring some of our amazing sponsors to give you all a taste of whats to come on July 17th. On You don't want to miss this - part 1 we will be featuring the amazing, perfect for any little girls birthday party/event!!!!

PriNceSS PaRtiEs

There will be a real princess at Makenzie's Live, Laugh, Breathe Event! They will be there to take pictures with, sing, dance, spin in circles and have the best day with your little ones (or you, i promise we wont judge :)

Doesn't it look like a blast! I cant wait to meet the princess. Sorry kids- you will have to wait your turn! I'm a little nuts about princesses esp. Ariel. Lets just all stay out of the way if she comes! Now which princess will be there is still a surprise!!!

You will have to come to find out!

Please visit A Princess Party to find out how you can have your very own princess at your birthday party!!!

*they do boy party's to*

http://aprincessparty.net/

Leggings!!!

2010-06-06T20:52:00.000-07:00

Less than 10 days until ill be sending the baby leggings to get embroidered. I will keep accepting donations through September but it would be amazing if we could get most of them embroidered with MRW. If you have any socks that are not already made into leggings, we will still get those done and make them after we get them back. Please send them as soon as possible. I will be sending them on JUNE 15th so I need them no later than JUNE 14th. Have you seen our counter? That's right, I have collected 210 pairs (not including the leggings from Alisha- they should be on their way in the mail).... CAN YOU BELIEVE IT?? I'm so amazed. This is such a great accomplishment and I have all of YOU to THANK... I cant wait to see how many more we get and I can only imagine the faces of those kids in the NICU when they are giving a pair of these. To know they are loved and that so many people are thinking of them gives me so much joy. Thank you Thank You Thank You to all who have donated. Keep em' coming. Remember our goal is 500!

Its June 2nd!

2010-06-02T09:39:00.000-07:00

I cant believe how quick Makenzie's live, laugh, breathe event is sneaking up on us! We have so many fun things being donated to the silent auction. You cant miss it! Check out our sponsors to the right. Most of them have donated something to the auction. We are so excited to get everything in order and ready to go. I am still in of more sponsors. I know times are tough right now and its hard to donate money, items or even time but please understand how important this fundraiser is. Did you know *** Whether we have heard of SMA or not, this ‘little known disease’ is afflicting an estimated 1 in every 6,000 live births. Worldwide, 13,000 lives are lost every year. Over 25,000 Americans have SMA. This is huge! We need to get the word out about SMA. We need to help raise money to find a cure. No child should have to suffer through this horrible disease. No parent should have to bury their child. We can all help. We can all make a difference. If you don't think your $10 will help- Your wrong. It will bring us $10 closer to finding a cure! The international scientific community agrees that of all neuromuscular diseases, SMA is the closest to developing a treatment or a cure. Because a cure is in sight, the National Institutes of Health (NIH) recently designated SMA as a model for their research program aimed to turn basic science into actual drugs and treatments. It is the educated expectation of leading scientists and clinicians worldwide that with the appropriate funding, an effective therapy for SMA can be achieved in five years or less. Small private investments in SMA research have resulted in tremendous breakthroughs. Look at that- we are close. Within this lifetime. Its not a far off cure that maybe someday we will find a cure for- its here and now. We will see an end. We just need your help to make it sooner rather than later! If you can- please donate! You will be changing lives! Now if you were not already planning on coming to our event- you better move your plans around because we have some awesome news! On top of awesome entertainment, great food, tons of activities, We will be raffling off....

A Nintendo Wii!!!!

Seriously... how can you miss it now? I promise you will have a fabulous time.

Spread the word. Tell your friends, your family, your work... If you want to hang fliers- email me and ill send you some. The count down is on!!!

45 more days!

Makenzie's Live, Laugh, Breathe Event.

2010-05-26T13:21:00.000-07:00

The agenda so far--- I thought I would share our agenda for the time being. This most likely will change but for now, here you go: 3:15 – 3:45 UFO’s (unicycle team performs) 4:00 – 5:15 Scales and Tails 5:30 – 6:15 The Magic of Timothy 6:30 – 7:00 Happy Birthday and Balloons 7:00 Silent Auction Ends 7:00 – 7:45 Live Band 7:45 – 8:30 Belly Dancers How can you miss a minute? There is going to be such amazing performers, great activities and lots of great junk food! Ryan is building the obstacle course (the newest addition) as we speak. We have some great surprises that will happen as well! 52 days left!

Its MAY 24th!!!

2010-05-24T08:01:00.000-07:00

I cant believe it. My anxiety is growing everyday. We are getting so much closer to Makenzie's Live, Laugh, Breathe event and there is still soooo SOOO SOOO SO much to do. BUT This post isn't for that. Its for our Kenzie leggings project. Can you believe its almost June. That means you only have 1 week to order from ALISHA for $5 leggings! AND you only have a few short weeks to get me the rest of the leggings that will get monogrammed with MRW... REMEMBER I need all those no later than June 14th as I am sending them off on June 15th!!!! I got a pretty big donation last week so ill update my numbers in the next week or so. If you don't want to buy leggings yourself or make them, you can donate with the button to the right and let me know how you would like your leggings money spent and ill do it for you. I can buy socks that ill make into leggings or I can order from Alisha. You let me know!!! I hope everyone is doing great and had a wonderful weekend!

...Update...

2010-05-17T07:50:00.001-07:00

So we have a whole blog just for MRW Live, Laugh Breathe!!! Its all so exciting and I cant wait to see what else comes out of this amazing name. This isnt going to end with the event in July or the Leggings project. It will be ongoing for the rest of our lives. This is one small thing we can do to keep our daughters legacy alive and help spread awarness for SMA/SMARD.

Thank you to everyone who is helping me every step of the way. I cant do it alone and you are all so amazing to step up and help out!

Remember- You only have 14 more days to place your order with ALISHA in order for her to send me the leggings in one big order. (remember only $5 for each pair of baby leggings and for every 5 you buy she will throw in one for free) I will be sending any and all leggings I have to get embroidered on June 15th so hurry and get them to me so they can get the MRW logo on them. Makenzie's Live, Laugh, Breathe Event is coming along great! Its 2 months from today! I still have so much to do and so many people to still contact. Remember I still need lots of help so if your interested please let me know. I need everything from, volunteers to sponsors! I need silent auction items to just spreading the word and getting people to come! Its going to be an amazing event. We have lots of great entertainment. There will be tons of fun activities. AND lots of yummy food. Some of the newest items that have been added to our silent auction: * Uof U gift basket * Quilts * Gas Gift Card * Spa Gift Card * Movie Gift basket * Outdoor Mister set * Hair Gift Basket + tons of adorable crafts! This is just a few items. We have so many already. I cant wait to see what elses comes in. June 12th is our pizza party for anyone who would like to volunteer at the MRW Live, Laugh, Breathe Event. We will have lots of pizza and drinks from 6-7 pm at Shepard Park in Farmington. Please mark you calendars!!! (I am not expecting anyone to volunteer the entire night, Its only when you want to. I still want you to enjoy the event!!!) Make sure to grab our button to the right and spread the word through your blog/email and/or Facebook/Twitter/Myspace!!!

Makenzie's Live, Laugh, Breathe Event!

2010-05-12T10:27:00.000-07:00

july 18 2009 was perfect. she came to us. she opened her eyes, she took her first breath. my world stopped. everything changed. she was my reason. before she was even born i was planning trips, play dates, outings, summer parties, winter parties, birthday parties. i was going to have the perfect outfit for her. i was going to make sure she had a blast and it was something she would remember for a lifetime.she lived 4 months 3 weeks and 4 days.during her life it was a party everyday for me.i celebrated every second of her life. we had 1 month birthday parties, we had park days, we had spa days.it just wasn't enough for an entire lifetime. i need more. while our muffin is dancing in heaven on July 17th 2010 we will be here celebrating her life. all 4 months, 3 weeks and 4 days of it. we are giving her a 1st birthday party. complete with the fairy theme i imagined. and You are ALL invited. your friends, your family, your neighbors- all invited. Makenzie's birthday will be an extravagant, out of this world, super cool, fun- fundraiser. all money raised will be donated to the Gwendolyn Strong Foundation to help fund SMA research. Makenzie had SMARD, however, there is currently no research being done solely on SMARD but through SMA we are hoping to find a cure for both these diseases. no child should have to go through this. no child should have to struggle to live. no parent should have to bury their child. this is what its about. to find a cure. Now I'm reaching out to all of you asking for your help. We are in need of volunteers. I have some amazing entertainers offer to volunteer their services for our event. I have some amazing people helping donate some food. But we will need more. For the amount of people we are planning (approx. 500 - 1000) and to help raise the money I am hoping ($10,000) I need all the help I can get. Some of the events include but are not limited to: *cotton candy machine *An amazing bounce house *Silent Auction *A Clown *The Magic of Timothy- the Magician *Food *A PRINCESS *Kenzie Fairy Boutique and seriously--- SO much more! Right now I am needing help with the following: * Items for the silent auction. * Sponsors- If you know someone or you are interested please let me know.I have different sponsor levels and your business will have the proper signage and publicity for the level they are at. * If you know any other entertainers that would be interested in donating their services. You can contact me through email and I can give you my phone number from there. livingformrw@hotmail.com I hope you can all commit to coming to this event! You will not only be promised a fabulous time but you will be helping an amazing cause and celebrating an incredible little girl. Some information about SMA- SMA kills more infants and young children than any other inherited disease! -SMA is degenerative and terminal — often termed the “Lou Gehrig’s disease of babies”. -Although born seemingly healthy, babies with SMA eventually lose the ability to walk, crawl, sit, eat, breath, and even swallow. -1 in 40 people unknowingly carry the SMA gene. Few have a family history of the disease. -There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders. -Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources. -SMA is considered a "model" disease already benefiting research into ALS, Alzheimer's, Parkinson's, the muscular dystrophies and even some forms of cancer.For more information about SMA visit the Gwendolyn Strong Foundation.

Kenzie's Baby Leggings Project!

2010-05-12T10:19:00.000-07:00

Whenever I see a pair of leggings I think of Makenzie. Doesn't matter the color, the look, I imagine her skinny little chicken legs in them. This girl became famous in the PICU because of these things. One of the first things that came to mind after Kenzie passed away was to make these and donate them to the PICU in honor of our daughter. I have talked to several people at PCMC and they all love the idea. The thing that's great about these is you can not only wear them on your legs but your arms. They will keep these kids warm- seriously those rooms are freezing. Through the rest of this year I am asking for donations. They can come in the form of knee high adults socks that I can make into leggings, already made baby leggings(called baby legs ), or if you could donate a few dollars to help the project. On December 13 2010 my family and I are going to visit the children's hospital and give them our gifts. My goal is to donate close to 500 leggings! *Here are some examples of the adult KNEE high socks that can be donated. They need to be fun/funky/different patterns or solid colors (no boring white please) *For these socks, I was planning on sewing them myself along with some family members that have offered to help but if you would like to help sew them- please email me and ill send you the instructions and patterns. (I promise, its really easy) *You can buy these socks at numerous places. I usually get them at target because you can buy 3 for around $6. *If you will be sending these socks or money donations please have them to me no later than September 1st so I can have enough time to sew them. You can email me for my address. *Here is what they look like when they are done. I will be making numerous sizes so not just infants can wear them. *These are the already made-nothing else to do but stick those cute things on a pair of fat, plump, or skinny legs.*You can buy these at target, walmart, kid to kid, any baby boutique or online at http://www.babylegs.com/. They are more expensive (around $8-$10) a pair but there is no work to be done and they fit for quite a bit longer than the homemade leggings. Please don't feel obligated to help, this is only if you want to.This project means a lot to me.If I only donate 10 pairs- Ill be happy because 10 little legs or arms will be warm and 10 little angels will get to know my angel a bit better.If you have any questions please email me:livingformrw@hotmail.com. *and for my inspiration*

Her Story

2010-05-12T08:20:00.000-07:00

July 18th 2009 at 2:10 am Makenzie Rye Webster was born. This tiny 6lb 19 1/2 inch. beautiful girl. As soon as they placed her on my stomach her eyes popped open. Her arms stretched out and she was here. She never cried. She was just happy to be alive. Everything was perfect. She did amazing the first 2 months of life. During that time we went swimming, took a road trip to bear lake, took a road trip to the cabin down south, lots of walks, lots of shopping trips, lots of restaurants, lots of parks, lots of sun, lots of smiles, lots of friends, lots of family, lots of pictures lots of loves, lots of visitors. She was our pride and joy. Life happily revolved around her. She completed our family and made it a dream come true. At 2 months Makenzie started to breathe a little funny. She was making a squeaking noise and acting like she was working a little harder to breathe. Her pediatrician kept assuring us it was normal and that she would grow out of it. By the first part of October she started having spells where she would lose her breath and be gasping for air. After the second time she did this we rushed her to the children's hospital. We ended up spending the night and checked out the next day with no answers. They couldn't find anything wrong. As the next couple weeks went by it was almost daily that we were calling her pediatrician saying she isn't getting better and is almost getting worse. During this time she also started eating less and less. She didn't seem hungry. I was nursing until the beginning of Oct. when she completely quit. At the time we didn't know why but found out later it was because she didn't have any strength to suck but a bottle was easier for her. The first week of November she seemed really bad so we took her to her pediatrician who said she didn't look right and referred us to an ENT (ear nose throat)doctor at Primary Children's Hospital. After we meet with the ENT he decided to try surgery for what he thought was laryngomalacia. They cut away a flap of skin in her throat and hoped it was the cause of her difficulty breathing and eating. After surgery we stayed at PCMC for 2 nights before we were able to go home. After we got home our little girl seemed to keep getting worse. She wasn't eating hardly anything and was only wanting her Mom. She would only lay in one position and would cry if you held her any other way. Her doctors assured us it was just because she is having trouble after surgery and that she should be fine soon. On November 17th my mom was babysitting her while I went to work. I got a call half way through the day from my sister, who was with them, telling me Makenzie kept turning shades of grayish blue. She was worried about her and said she thinks I should take her to the doctor. I left work and took Makenzie to the ER at IMC. I decided if I went to a hospital like that and she really needed to be admitted they would take us by ambulance and she would be seen sooner. AND. That's exactly what happened. They hooked her up to the pulse ox. and her oxygen levels were in the 70's when they should be no lower than 90. They put oxygen in her nose and rushed her in an ambulance to PCMC. Ryan (DAD) meet us there. They admitted her to the 3rd floor for testing. Her weight had dropped to 8 lbs. At her 2 month apt she was 9 lbs. She was extremely dehydrated and malnourished. For the next 2 days they ran hundreds of tests. We were hardly ever in her room because we were going from one xray, to one mri, to another test. They had to keep turning her oxygen up because she kept dropping. On November 19th a team of specialists came into Makenzies room. By this point she was having so much trouble breathing she was laying on her side and arching her back so much her little head was touching her back. She was trying to get air anyway she could. As I stood next to my little girl that day trying to catch words I could understand in that doctor lingo being thrown around I felt alone. I was scared. This whole time I kept thinking she would be fine, there is just some medicine she needs to get put on and everything will be okay. That day was the first day I was completely unsure. Within minutes the neurologist order for Makenzie to be transported to the PICU and intubated. Everything was thrown in her crib, I grabbed my bag and we were off. Down to the second floor. We were greeted by Ryan (who raced up there as fast as he could) and a team of doctors and nurses ready to help Makenzie. They asked Ryan and I to go out of the room while they intubated her. We sat out in the hall trying to digest everything that just happened. We were scared. In a matter of minutes we had to mature enough to understand our daughter was in the hospital, intubated and not sure whats wrong with her. We are young and this shouldn't have happened to our family. We haven't lived yet, we haven't showed our little girl the world yet. After we went back in the room we were amazed at the difference in Makenzie. We were with her every second of the day the past few months. It was hard for us to really see how much she was struggling to breath until we saw her breathing with ease. We both broke down. It was so beautiful yet so horrible. We held her little tummy that was so small her skin was just hanging there. We kissed her millions of times and rubbed her little arms and legs. The next few days were filled with tests... tests... more tests... and introduced to the wonderful new world of CPT and cough assist. Since she had this breathing tube in, she was unable to move around her secretions like the rest of us. When you cant move around secretions they build up and your lungs start to collapse. Every 3 hours were these treatments and every 3 hours Makenzie hated life. It was on November 21st that after many test we were told Makenzie has whats called Spinal Muscular Atrophy = SMA. They had to send in a blood test to confirm but all other test pointed to SMA. We were devastated. We were told right up front there are different forms of SMA and she may not have the more sever case and could live a fairly normal life. We understood no matter what type she had she most likely would never walk, run, dance, sit up... SMA is a degenerative disease which would mean at some point -whether it be at 1 year or 20 years she would lose everything and become paralyzed. Her brain however- would always be perfect. SMA doesn't effect the brain so she would have the brain of any other one her age. We did research. We talked to other families with SMA. We prepared ourselves for life with SMA. In order for us to do this financially we put our house up for sale, Ryans truck, We listed most all of our things online to sell, I even told my boss I wasn't going to come back to work and to find a replacement. At the time we felt we were given this new life and although its not like we imagined and dreamed we were going to take life by the horns and run with it. We realized our dreams have changed and as long as we have each other nothing else matters. November 30th 2009. Makenzie was scheduled to be extubated. They thought we could take the breathing tube out and make it the first step in getting our girl home. That morning was amazing. Kenzie and I kept counting down the hours and minutes until she was tubeless. Anticipating being able to hold her whenever I want and spin in circles with her, kiss her lips! As they extubated her she became distressed. Her levels started dropping. The doctors kept saying she just needed to calm down and take a breath. I was pretty much laying in the crib with her. I was holding her face and stroking her arms. I kept telling her to just breath and that she is okay. I tried to reassure her that she is doing a good job and that I'm here. She wouldn't stop looking at me. Her eyes will forever be in my mind. She was struggling, hurting and I wasn't helping. She was scared. I kept asking if they could do something for her. What felt like hours but only minutes passed when they said she isn't ready and that they needed to intubate her. They rushed me out of the room and began putting that damn tube back down her throat. Makenzie tried. She was trying so hard that day. She wanted to breath, she wanted to be held without tubes. She worked harder than anyone could have worked but her body just couldn't do it. I am so unbelievably proud of her. I am so honored to have a daughter who is so strong. After they let me come back in I just kept telling her how amazing she is. I kept kissing her and telling her that I was proud of her. December 1st- SMA blood results came back- NEGATIVE. Happy, sad, scared, relief, frustrated, concerned, unsure, angry- were just a few emotions that day. No SMA but we didn't know what that meant- better or worse. Her team of specialists took a step back that night- they went through all of their paperwork and her tests and said they would be back the next day with somewhere to go. December 2nd. Makenzie was schedule for a test. They did an xray of her chest. They watched her diaphragm. It worked perfect while the machine was on, but as soon as they turned it off, her diaphragm didn't move. Its paralyzed. December 2nd. 2 amazing doctors sat me down. They told me those words. Spinal Muscular Atrophy with Respiratory Distress = SMARD. Its similar to SMA but different which is why the test came back negative. It is a motor neuron disease, meaning there is progressive destruction of cells that control motor function, such as breathing and speaking. Cognitive function is unaffected. Like all motor neuron disease, there is no cure. It effects their breathing first (paralyzed diaphragm) and then moves to the rest of her body. Its a very new disease. Only being tested in the US within the last 6 months. Before that it was only tested in England. There is no research being done solely on SMARD. They know almost nothing about it. They know what gene it comes from, they know both parents are carriers. Every child is different and since its so new and so little people with SMARD they don't know exactly what she would or wouldn't be able to do in the future. What they do know is that she would need to be trached and on a ventilator 24/7 for the rest of her life. She would need 24 hr care which would mean a home nurse. At that moment she is at the best she would ever be. She wouldn't learn to walk, crawl, sit, run, sing, dance. She would slowly be deteriorating right before our eyes. They refer to this disease as the Lou Gehrig disease in infants. We were given a few horrible, unimaginable- no parent should have to decide options. - leave Makenzie in the hospital on life support until her body gives up on its own - trach and vent her. bring her home and slowly watch her go. she most likely would be completely paralyzed before age 1. - take her off life support and let her go. immediately i said i don't care what i have to do, give up and learn i will be bringing my daughter home and taking care of her. i didn't want to hear anything else. i only wanted her. i didn't care if she could walk or talk i would not love her any less. she would be here and that's all that mattered. ryan had a different plan in mind. for the first time through this whole ordeal we were not on the same page. he sat me down and said- we will do whatever is best for makenzie. she has to decide. if she isn't ready to go, than we will trach and vent her and take her home. we will dedicate our life to her and never look back. but. if she is ready to go, we have to. she has completed her journey in life. this is her life. over the next few days our world was completely turned inside out. most everything is a blur. we loved on makenzie every second. we told her stories and we talked to her. every morning i would come to her bed- give her kisses and ask what she wanted. after a few days- in the middle of a cpt/cough assist- my answer came. i looked into my daughters eyes and felt like she was talking to me. she told me she was done. she said she completed her journey, she did what she was suppose to do and she was ready to be free. i couldn't tell anyone for a few more days. i finally told ryan. he said he already knew. she told him right after we found out she had SMARD. we wouldn't tell family or friends or even the doctors. we weren't ready to face our reality. we wanted to give her everything we could while she was still here. we read her books, i told her all the stories i planned on telling her when she got older, we played, we smiled, we laughed, we sang, we loved each other unconditionally. we decided we would take her off life support on December 13th at 7:00 pm. A few days before we talked to her doctor and asked if Makenzie could be a donor. We told a few family members and one friend. We asked for no visitors the Saturday before and no visitors that Sunday morning. We asked Ryans parents and my Mom to come to the hospital on Sunday at 5. Be with her for a few hours and be with us while she went. December 12th we gave Makenzie her first Christmas. We had a tree, we played Christmas music, we gave her a present and we wrote her a letter. We held her all night. December 13th- minutes after our parents came in the room Makenzie started to make a funny noise. I asked Ryan to get the nurse who rushed in. She ran back out and started yelling at the doctors that her breathing tube was out. A team of 20ish doctors and nurses came running. The on call doctor looked at me and said- are you ready? Her tube was already out. I tried to take a breath and said okay. I held my little girl. I squeezed her tight. Ryan held us both. We kept telling her that we were there. We told her we love her. We promised we would be with her again. and then- our world, our life, our reason, our future... took her last breath. Makenzie Rye Webster born July 18th 2009 at 2:10 am went back to heaven on December 13th 2009 at 5:25 pm. She is our life- She is everything we are. Everyday is a struggle. We miss her beyond words. We ache for her daily. Our arms are heavy without her in them. We vowed to keep her alive. She did so much good in this world. She changed so many lives and she continues to do so with her story. There is so much more- so many more things that happened in the hospital but these are the main points. I never left her side. I lived at PCMC from November 17 - December 13. I never left. I ate, slept and showered there. I wouldn't leave her side. I was able to hold her very little. They had to restrict her movement so anytime I could hold her was very short and I couldn't move. It didn't matter though- those were the greatest moments of my life. To see her story in more detail visit our family blog: kendraandryanwebster.blogspot.com. You can see everything from the very beginning! She is our world. She is our future. She is our everything and we will live for her for the rest of our lives.

Just Breathe

Anthony's Story

Logan's Story

Maddison's Story

Learn of SMARD

MRW Live Laugh Breathe 2011

Today!!!

5 Days!!!!

SMARD Guest - Dakin

SMARD Guest - Presley

MRW Live, Laugh, Breathe

L*E*G*G*I*N*G*S

Second Annual Live, Laugh, Breathe Event!

UPDATE... MRW LIVE LAUGH BREATHE

Makenzie's 2nd Annual Live, Laugh, Breathe EVENT!

The FINAL Leggings of 2010

Long Overdue.... MRW Live Laugh Breathe Event.

Leggings Party #1

A Special Donation

The Leggings Project

Balloons

The Cake

LEGGINGS leggings LEGGINGS

Leggings

Makenzie's Live, Laugh, Breathe Event!

You Dont Want to Miss This - Part 10

LEGGINGS

You Dont Want to Miss This - Part 9

Ride for a good cause and honor MRW

Kenzie Boutique

You Dont Want to Miss This - Part 8

Its coming up!

You Dont Want to Miss This - Part 7

You Dont Want to Miss This - Part 6

Money- Mulah- Prices!

You Dont Want to Miss This - Part 5

LeGGinGs

You Dont Want to Miss This - Part 4

You Dont Want to Miss This - Part 3

You Dont Want to Miss This - Part 2

Volunteer Pizza Party

You dont want to miss this- part 1

Leggings!!!

SPONSORS

Its June 2nd!

Makenzie's Live, Laugh, Breathe Event.

Its MAY 24th!!!

...Update...

Makenzie's Live, Laugh, Breathe Event!

Kenzie's Baby Leggings Project!

Her Story

LEGGING*S