Sma type 1
Donation protected
Esma is a child with Type 1 SMA, a fatal disease. She was born on 20.11.2018 in Diyarbakir, is 2 years old and weighs 11 kg 400g. Esma Zolgensma has lost her U.S. treatment for gene therapy. There's another advert in Hungary and for this treatment, she cannot be more than 13.5kg.
Most children with SMA type 1 are too severe a neuromuscular disease to reach the age of two.
But there's hope.
In order to provide her with a future, she needs to receive gene therapy called Zolgensma, which is approved for babies under 2 years of age (and 13 kilos) and costs $2.1 million. The amount of donations that need to be collected, along with other costs such as transportation, accommodation and consultation, amounts to $2.4 million.
Esma is now 2 years old and unfortunately our time is very limited.
Any donation you make more or less is very valuable to Esma.
Most children with SMA type 1 are too severe a neuromuscular disease to reach the age of two.
But there's hope.
In order to provide her with a future, she needs to receive gene therapy called Zolgensma, which is approved for babies under 2 years of age (and 13 kilos) and costs $2.1 million. The amount of donations that need to be collected, along with other costs such as transportation, accommodation and consultation, amounts to $2.4 million.
Esma is now 2 years old and unfortunately our time is very limited.
Any donation you make more or less is very valuable to Esma.
Organizer
Hazel Bellikli
Organizer
