Baltimore Part 2: The Battle for James

Alright family, friends, prayer warriors: you have asked what you can do to help. Well, I can tell you that Cory and I are going to fight this disease come hell or high water for James.

Yes, James will eventually lose most of his abilities, including but not limited to: walking, talking, sight and eventually life. Will he make it to his teenage years? We hope so.

Our fortune is catching this disease in the extremely early stages. The enzyme replacement therapy will help hold off the disease, but he will still regress, gratefully, it’ll be slower.

So, I’m asking you to help us fight and bring awareness to this extremely rare disease.

Gene therapy trials at pharmaceutical companies have halted and/or stopped around the world for this disease.

The Batten Disease Support and Research Association is holding a conference July 12-14 in St. Louis for this disease. Pharma will be there, other families will be there and anyone can go.