Help Tas Fight Duchenne Muscular Dystrophy
Tas is a brave 10-year-old boy diagnosed with Duchenne Muscular Dystrophy. With your support, we can help him access the gene therapy treatment he desperately needs.
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Tas is a brave 10-year-old boy diagnosed with Duchenne Muscular Dystrophy. With your support, we can help him access the gene therapy treatment he desperately needs.
Donate NowDuchenne Muscular Dystrophy (DMD) is a rare genetic disorder characterized by progressive muscle degeneration and weakness. It primarily affects boys and is caused by a mutation in the gene that produces dystrophin, a protein essential for muscle strength and function.
Without treatment, DMD leads to severe disability and significantly shortened life expectancy. Most patients are confined to a wheelchair by the age of 10-12, and the expected age limit is 26-28 years. However, with proper medical care, physical therapy, and emerging treatments, children like Tas can lead fuller, longer lives.
Learn More About Tas's Journey
We're raising $3.5 million for Tas's gene therapy treatment, which is currently the only way to delay the atrophy of his muscles.
Funds will help cover the cost of Elevedys, a gene therapy product developed for Duchenne muscular dystrophy that can stop the destruction of muscle cells.
As DMD progresses, Tas will need specialized equipment to maintain his mobility and independence, including a wheelchair, patient lift, and home modifications.
Regular physical therapy, kinesiotherapy, movement therapy, and therapeutic massage are crucial to maintain muscle function and quality of life for as long as possible.
The Sebestyén family from Transylvania is fighting a battle against time. Tas was diagnosed with Duchenne Muscular Dystrophy five years ago when he was just 5 years old. His parents, Gabriella and Béla, noticed that his movement was weakening and he was falling behind his peers.
After medical examinations and genetic testing, the diagnosis was confirmed. Since then, his family has been doing everything they can to prevent Duchenne from taking control of their lives, while also caring for Tas's little sister, Panna.
Despite the challenges he faces, Tas remains a cheerful, smiling, and humorous boy. He enjoys playing with Lego, video games, and swimming when possible. Every day is a challenge for him as simple movements that other children do easily are extremely difficult for him.
Currently, Tas takes steroids imported from Germany and attends various therapies daily: three times a week for kinesiotherapy, once for movement therapy, and once for therapeutic massage. However, his condition continues to deteriorate.
Read More About TasEvery donation brings Tas one step closer to the gene therapy treatment he needs. Join our community of supporters today.