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Calebs Chance Foundation is a project of The Giving Back Fund, Inc. (Federal Tax ID 04-3367888), a Massachusetts nonprofit corporation with federal tax exempt status as a public charity under Section 501(c)(3).
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Paving the Road Towards a Better Future
Our mission is to help spread awareness, and do our part to fund a treatment for Caleb's variant of batten before time runs out. We want to prevent years of misdiagnosis, and help create treatment options for other families. Our hope is that together with our unbelievable scientists, and partnering organizations, our work will give Caleb, and people enduring neurodegenerative diseases worldwide, a chance for a future.
What is Batten's Disease?
Neuronal Ceroid Lipofuscinosis, more commonly referred to as Batten Disease, is a rare neurodegenerative disease causing seizures, vision loss, cognitive impairment and early death ranging from late childhood to late thirties. There is no known cure.
The day Caleb was born was the most joyous day a mother can experience. He came into the world strong and healthy. He crawled, walked, and hit his milestones right on time. Then, things changed. At three, we noticed Caleb’s language wasn’t progressing, and he became somewhat withdrawn, and hyper focused.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. At 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.