Bind up Batten Fund in Beyond Batten Disease Foundation
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Six years after unexpectedly losing our three year old Max to a malrotation in his small intestines, we learned the devastating news that our second oldest son, Charleston, has juvenile Batten disease.

Batten disease is a rare and fatal genetic disorder that affects otherwise healthy children. The symptoms include blindness, seizures, cognitive decline and mobility issues. Currently the disease is terminal by the late teens or early 20s because there is no treatment or cure. Our family has joined Beyond Batten Disease Foundation and we are on a mission to change that.

Charles began having vision problems in preschool and he was fitted with glasses. Unfortunately, his vision continued to worsen, leading to a series of tests. In April 2017 genetic testing determined that he has Batten disease. Charles has three younger brothers who each carry a risk of having Batten disease, but none have been tested yet. We have chosen to focus on the “now” and enjoy every moment together, creating memories as a family.

Today, Charleston is eight and has begun to exhibit additional symptoms. However, he is still happy and active. He enjoys riding his bike and is even learning how to snow ski. With the help of technology he continues to excel in his second grade classroom. When Charles grows up he wants to be an engineer. He is our son, a loving brother to Gus, Leu, and Henry. He is a friend, a grandson, a cousin and a nephew. His determination strengthens us because if he’s not giving up then neither are we.

We have created the Bind Up Batten Fund at Beyond Batten Disease Foundation to spread awareness and raise funds for medical research to eradicate this disease. Together with the foundation and our community of supporters we are funding a treatment that slows the progression of the disease to help Charleston and all families who are affected by Batten. Please join our efforts by making a donation or supporting one of our fundraising events.
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