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Living with cystinosis: A look into the life of 8-year-old Emma Suetta

When 8-year-old Emma Suetta was just 20 months old, doctors from San Francisco diagnosed her with cystinosis, a rare autosomal recessive disease that affects 1 in 100,000-200,000 live births in

Family sells treats, cookbooks to fund daughter s rare disease research

Siskiyou Daily News The family of a 7-year-old Siskiyou County girl raised almost $30,000 selling baked goods and cookbooks to help researchers find new treatments for the child s rare disease. Photographer Shelly Suetta, 38, of Greenview wrote “Desserts for a Cure,” a compilation of family recipes she makes with her daughters, Emma, 7, and Lilly, 10. The family also raises money with bake sales they host at the Scott Valley Wide Yard Sale, which takes place the first Saturday in June. It s a labor of love, Shelly Suetta said, to help fund research to treat and cure cystinosis   a rare genetic disease affecting Emma and several hundred other Americans.

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