Umut’a umut olalım

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Umut Kayra Kilic, son of Mustafa Kemal Kilic and Ceyda Kilic, is a 13 months old baby boy diagnosed with SMA Type 1. SMA is a rare genetic disease caused by a lack of spinal motor neuron (SMN) protein, which is a crucial protein for muscle development and movement. SMA patients lose their motor function throughout their lives, face life-threatening complications.

As of May 2019, the FDA and EMA approved a drug that can provide a gene missing in SMA patients through only one infusion. We are fighting for our little Umut to get this drug to save his life. Zolgensma treatment will help Umut breathe on his own, maintain his life as a healthy baby, and even walk on his own one day. However, the cost of the treatment is enormously expensive, $2,313,050.00; and children can only get their treatment before they turn two years of age. In the scientific literature, it is proven that the sooner the child receives the treatment, the more benefit they get. Umut needs to receive Zolgensma infusion as soon as possible to get the best use out of the treatment.

We are asking for your kind donations to help him with his medication. We have a very tight timeline to achieve this goal, and we can only get there with your support.

You can find his hospital invitation letters and genetic test results on this website and our Instagram account. Please feel free to reach out with any questions you might have.

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Sincerely,

Umut's Family