Kiley Marie from NY
I am Kiley's mom Tina. Kiley was born in June of 06. In December of 06, she received a diagnosis of infantile spasms, etiology unknown. We went thriugh Acth, keppra, klonopin, depakote, vigabitrin, sabril, ketogenic diet and nothing controlled the seizures. In 2008, we finally received an etiology, Cdkl5-stk9. A disorder that changed her life and mine! She had received numerous therapies, feeding, speech, pt, ot, went to a special school but her dystonia and seizures were working against us. Kiley was put on a gtube peg in 2006. She received a baclofen pump in 2010. We had been to WMC, Chop, Boston and Nyc but to no avail. The drs didnt know anything. To this day there might be approximately 1000 kids with cdkl5. The disorder didn't take her soul, but it certaintly took her body. Kiley was a smiley kid. She was loveable with her big brown eyes, brown hair, dimples and huge smiley. Everywhere we went she was adored. But Kiley suffered and there was no cure and so in November of 2011, Kiley went to live in Heaven. She wpuld have been 11 years old next month. Her little soul is still with me. I pray that there is a cure for not only this genetic disorder but for all. Kiley's legacy, I am living. She will always be remembered and I will always fight for a cure.
Kiley's mom Tina
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