A Single Injection to Save a Life

www.youtube.com/embed/VtY3bymH7XA (Faith's story)

Faith is a dedicated Early Childhood teacher, loving wife, and new mother. Her life is overshadowed by a rare and devastating disease that claimed her brother, Antonn, and now threatens both her and her other brother, Daniel.

Antonn passed away at 42 from this disease. Once a strong builder, he lost the ability to walk, speak, and hold objects. Despite seeing top neurologists, his condition went undiagnosed. As a teen, Faith became his caregiver, watching him deteriorate before his passing.

Sialidosis is inherited, and now Faith and Daniel face the same fate.

Daniel, once a talented guitarist who opened for Van Halen at 16, has seen his passion fade due to Sialidosis. His wish is to continue doing everyday things like swimming with his children. When Daniel noticed symptoms similar to Antonn's, he and his wife moved to Australia for answers. After months of testing, Daniel was diagnosed with Sialidosis, a rare metabolic disorder caused by a defective gene (NEU1) leading to irreversible symptoms. Historically, there has been no official treatment for Sialidosis.

https://www.youtube.com/watch?v=viqq-l8KRVs (Supporting Dan - Metabolic Specialist Dr. d'Azzo)

But now, there is hope. A groundbreaking gene therapy from St. Jude Children’s Hospital and the University of Massachusetts can reverse the disease with a single injection.

Please donate today and help give Faith and Daniel life-saving therapy. Every contribution brings them closer.