As June begins, and brings the excitement of summer with it, it is important to also be aware. Aware that this month has a great meaning for children and families suffering from CDKL5. To many, it is the disease identified by some letters and numbers. But to those who are affected, it is a daily battle to get through the day, and pray for a cure. CDKL5 is generated by the lack of a protein in the brain, and causes refractory epilepsies, most commonly in females. Most of those affected by CDKL5 cannot walk or talk, and require constant care, attention and a variety of therapies. But regardless of their delayed development, the light in their eyes always manages to shine through, as it does with beautiful Julia.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So now, you are aware. And we urge you to pass along the message and make others mindful that this disease exists. A greater awareness will lead to a higher rate of diagnosis, and therefore larger emphasis on studying the disease and possible cures. We challenge you to always be aware, because the kids who have this disease are stronger than us all. They struggle so much, but there is nothing more pure than the love in their souls.