David’s Fight to Cure CDKL5

At just a few weeks old, we realized something wasn’t quite right with David. We took him to the doctor who thought we were seeing symptoms of reflux. Knowing in our gut that this wasn’t accurate, we got in with a neurologist. After a multitude of tests they told us that David had infantile spasms and intractable epilepsy and probably wouldn’t live past five. We didn’t stop at this diagnosis though. His actions weren’t quite what the definitions of the disorders explained. He was more than what the doctors said and we needed to find answers. At seven years old, he was being monitored and a new test had been developed. Doctors weren’t sure if David was a candidate for it. After deliberating, they approved him for the test.
The week of mother’s day, 2011, we finally got an answer. David was diagnosed with a very rare disorder called CDKL5. There was no treatment, no cure, no support.
Within the next year we were introduced to Dr. Helen Leonard in Australia who is at the head of reasearch for CDKL5. Over the years we have been on a team of families gathering information for research and to help those diagnosed in the future.
David is now nearing 14 years old and has endured well over 60,000 seizures with no treatments helping. He cannot walk, talk, nor feed himself, is wheelchair bound and 100% dependent on others to survive. But, we have hope. Due to so few being stricken with this disorder, research funds are scarce.
Please help us in raising research money for CDKL5.
Our family will be going to the conference this June in a Colorado and will be presenting the check to the IFCR team at that time.