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

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

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

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.

Customize a free photo slideshow

Leggings Party #1

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

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

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 :)

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 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

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.