Moving America Forward

From Alone With a Rare Disease to Building a Community of Support

December 20, 2013
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From Alone With a Rare Disease to Building a Community of Support
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How hot chocolate and a website turned into a community for kids facing a tough diagnosis.

Juvenile myositis is an incurable, life-threatening autoimmune disease that strikes children at a frighteningly young age. Infants’ and toddlers’ immune systems turn against them and attack almost all of the body’s systems, including the heart and lungs. It’s also incredibly rare, which means that living with JM can be incredibly isolating. When five-year-old Eldon asked why he was sick, he had no idea that his family was about to uncover an amazing source of hope. Fundraising turned into community building, and all of a sudden, Eldon and his family found themselves expanding what was a lonely world, getting in touch with families who would share their journey, and running an inspiring little hot chocolate stand.

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