Moving Mountains for Madelyn
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We are determined to make each step count by fundraising to cure, mend, comfort and save the estimated one million children who will walk through the hospital doors this year. Children from all 50 states and more than 30 countries. Your contribution helps kids everywhere through life-saving research and care.
Our team would like to recognize and raise awareness this year for CDKL5, a rare genetic disorder that has impacted our own team. one of our co-worker's daughters, Madelyn, has been diagnosed and is a true champion as she helps raise awareness and reserach on treatment for the disorder.
Madelyn is a 2 ½ year old, sweet girl who at just 4 months old was diagnosed with CDKL5, a rare genetic disorder. CDKL5 is known for difficult to control seizures and severe neurodevelopmental impairment. Maddie started having seizures at 10 weeks old and currently has daily seizures despite many medications and treatments to control the seizures. Maddie also struggled with hip dyspasia after she was born and was in a hip harness for many weeks, unrelated to her diagnosis. Since her diagnosis, Maddie has been involved in many therapies including weekly speech, PT and feeding therapies in addition to early intervention. At a year old, she had a feeding tube placed due to not being able to eat by mouth. She has made significant progress in eating and now takes many bites of food by mouth and is learning to drink through a straw. Physically, Maddie is unable to walk or crawl and has a wheel chair with fun light up wheels. Recently, she started moving around a lot by rolling and sitting and falling. She is non-verbal but is demonstrating understanding of things more and more. Maddie is very social, loves to smile and loves to watch Sponge Bob! She has progressed much farther than doctors thought she might and is a daily inspiration in all that she overcomes!
Please check out her page below for more information:http://movingmountainswithmadelyn.weebly.com/madelyns-story.html