The story of Rylee
Hi there! I am Rylee and I’m 9 (almost 10)years old & I live in OHIO. I was born with a very rare genetic mutation known as CDKL5. It is very similar to RETT SYNDROME which is more familiar to most people. CDKL5 is a rare X‐linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro‐developmental impairment. I am unable to walk or talk and I am totally reliant on my mom and others to care for me. I suffer from seizures which started as infantile spasms when I was about 2 months old and severe sleep issues. Sometimes I can go for days with no sleep! There is no cure for CDKL5 yet, however I do believe someday there will be. In the meantime, I try my best to overcome CDKL5. I communicate some with my hands and with different noises. I ride a horse 2 hours a week, participate in adaptive ice skating 2 hours a week and swim 1 hour each week. I am very sociable and loving and my laugh makes EVERYONE smile. I may have CDKL5 but it certainly doesn’t have me!
To learn more about CDKL5 please visit www.cdkl5.com.