The story of Aubrey
Rylee is 8 (almost 9) years old and she was diagnosed with CDKL5 at the age of 5 after endlessly searching for answers. She suffers from seizures, low muscle tone, global delays, serious sleep issues and poor vision. She cannot walk or talk and is totally dependent on her caregiver. While she has CDKL5, it does NOT have her! She is a beautiful, sociable, loving & strong little girl with the most contagious laughter you’ll ever here. She enjoys riding her horse, doing adaptive ice skating, eating steak, listening to music and spending time with loved ones. Everyday she gets stronger and stronger, but we do everything we can to advocate and spread awareness for all of our friends suffering from CDKL5. One of my favorite quotes; “I am her voice, and she is my heart”. (Mom, Aubrey)
Hope*Love*Cure CDKL5 <3 'together we are stronger'!!!