CALEB IS A FIGHTER BUT NEEDS YOUR HELP IN ORDER TO GIVE HIM, AND OTHER CHILDREN DIAGNOSED WITH BATTEN A CHANCE FOR A FUTURE. He came into the world strong and healthy. He crawled, walked, and hit his milestones right on time. At three, we noticed Caleb’s language wasn’t progressing, and he became somewhat withdrawn, and hyper focused. Specialists determined that Caleb was on the autism spectrum. A
t four, Caleb started having subtle uncontrollable seizures, and was diagnosed with epilepsy. As time passed, Caleb slowly began having trouble with articulation, and motor planning. By five, he had lost a large portion of his vocabulary, and his motor skills were diminishing. Caleb had small time periods where he seemed to be improving but his progress never seemed to last. Nevertheless,Caleb always found the strength to smile. Caleb was frequently assessed by doctors, which resulted in numerous hospitalizations, and even surgery to help his seizures. The doctors attributed his loss of abilities to his intractable epilepsy.
In September of 2017, just a few months before his 6th birthday, Caleb was alert, and happy again. He had been seizure free for two months when we received a call stating geneticists had finally found a reason for all of Caleb’s challenges. The doctors diagnosed Caleb with Batten Disease. We were in complete shock, and in devastating disbelief.
