Anthony's Story

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

"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

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

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

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

Thank You

Thank You

Today!!!

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!!!!

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

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

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

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.

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

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!

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

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