the rainbow connection: support for nil
Nil Güleç is 20.5 months old and was diagnosed with Type 2 Spinal Muscular Atrophy (SMA) on January 22, 2020.
Nil is unable to walk or even stand, but there is hope to change the course of the disease.
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 and with additional expenses the total amount reaches $ 2.4 million.
A fundraising campaign has been initiated through GoFundMe crowd funding site. More than $1 million dollars has already been donated!
There's still a long way to go. They need $1 million dollars more to afford the treatment. They have a fight against the clock since Nil is 20.5 months old. They have only 3.5 months to reach the financing of the treatment.
To support her, you can donate through: https://www.gofundme.com/f/save-nil039s-life
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 finally die at any given time. 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. Zolgensma can save lives of those who are lucky enough to get it with a single dose treatment.