The Biyala Family

What Rare Disease were you or your family diagnosed with?

CDKL5.

Please tell us how long ago and how your journey with your rare disease started?

From a brother’s perspective:

Aiyana has CDKL5, it’s a rare genetic disorder that causes seizures that are very difficult to control. Because of CDKL5, Aiyana cannot do most things that a 5 year old can.

 As a kid, I’m pretty sure I don’t know everything that Aiyana suffers from, but I know for sure that it’s bad. What CDKL5 is to me is an evil thing. All evil things go away, right? At least they do in the movies. Well, I expect CDKL5 to do the same. 

What is your greatest hope for your sister?

My hopes for Aiyana are that she gets better and that she can be thought of as an equal to everyone else, special needs or not. Together we can make this happen, right? After all, we are RareKC!