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Our 14 year old son was diagnosed with Batten Disease in December 2005. This is a neurological degenerative disease that leads to an all too early death of its suffers. The children with this disease will only survive into their late teens or early twenties. We are trying to educate the public to this cruel disease, and hope for added help and support to try to find a cure before it's too late. There is only 715 cases in the United States, that is how RARE this disease is. |
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Nicholas has been having more seizures lately. Hoping this is not a
downward trend. Thank you for all your support.
downward trend. Thank you for all your support.