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My precious son, Juju, took a significant step in his life recently when he started second grade. Earlier this year, Juju became an older brother when my daughter, Serenity, was born with a congenital heart defect called pulmonary atresia. Between this new role, more responsibilities at school, and…
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As the mother of a child with late-infantile Batten disease (CLN2 disease), I find myself on a journey that is both heart-wrenching and illuminating. Each day presents unique challenges, and while the emotional toll can be overwhelming, I’ve learned the importance of not allowing those emotions to overshadow my…
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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