be the breath of Zeynep Sare
Zeynep Sare was diagnosed with spinal muscular atrophy (SMA) type 1. In order to have a better future and especially to live, Zeynep Sare has to receive a genetic therapy called Zolgensma. Zolgensma costs € 1,8 million. Zolgensma approval only covers children under 2 years.
Zeynep Sare is 15 now months old and she has already survived two heart attacks! she can currently only breathe through tracheostomy. In addition, it weighs only 7 kilos!! We have a fight against the clock. She must receive her treatment as soon as possible. We are supporting as a charity organisation ASYA Hilfsorganisation e.V. litte "braveheart" Zeynep Sare.
Your donations will be greatly appreciated. This campaign is dedicated exclusively to Zeynep Sare.
Spinal Muscular Atrophy (SMA) is a neuromuscular disease, which is manifested by a progressive loss of muscle strength that affects the ability to walk, swallow and breathe. And it is the first genetic cause of infant mortality. It is caused by a mutation in the survival gene of motor neurons 1 (SMN1). This gene is responsible for the production of a protein that is critical for the nerves that control our muscles. Without this protein, these neurons cannot function properly and die at any given time. And there is a genetic therapy called "Zolgensma" approved by the US Food and Drug Administration (FDA) for children under 2 years old with a price of 2.15 million dollars. Zolgensma is designed to replace the missing or defective SMN1 gene with a functional copy that produces the SMN protein, thereby improving the function and survival of motor neurons. It seems that Zolgensma can save lives of those who are lucky enough to get it with a single dose treatment. Today Zeynep Sare can't stand or walk and feeded through his nose. Unfortunately, she doesn't have a second to lose. We need the support of volunteers who can help her during this fight and donate motor neurons for this breaveheart. We hope that Zeynep Sare is one of the lucky patients receiving this treatment.
PS: Your donations will be transferred directly to the hospital for treatment
ASYA Hilfsorganisation e.V.
Wickenweg 1, 73730 Esslingen am Neckar