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