Every once in a while, my fingers betray my heart. Without even thinking, I’ll unlock my phone and instinctively open the bus tracker app, waiting to see my son Juju’s school bus make its way toward our house. It had become such a normal part of my morning routine that…
Discussion
Dear Juju, A few days ago, I opened the column I hadn’t finished writing. It was sitting on my computer exactly where I’d left it. I’d been writing about your tremors getting worse and your upcoming infusion. I wrote about how Dad and I were doing everything we could to…
Becoming educated and informed about Batten disease is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your journey.
There is no cure for Batten disease yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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