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.
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