I am thankful to be Juju’s mother, and I am angry that Batten disease took so much from my baby. I thank God for the knowledge, willpower, and voice he has given me, even when that voice shakes. Some days I can talk about research and sound strong, but…
Discussion
My husband and I are decorating for Halloween, and every decision reminds us of our late son, Juju. This is our first Halloween since he gained his wings in May, and I keep thinking about the little boy who should be here with us. Juju lived with CLN2 disease, also…
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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