Save Ayana

Dear Friends

My name is Regina Segizekova. I am from Kazakhstan. I have a loving husband and long anticipated beautiful daughter. Her name is Ayana and she is just 1.3 years old. We are an average working-class family, we’ve always lived modest but happy life and never asked anyone for help up until my daughter was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 about a month ago. SMA a sporadic genetic disease that has robbed her of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to stand, walk, sit, and potentially eat, or breathe independently. In order to save and maintain her vital body functions, our daughter is in desperate need of one-time vein infusion gene therapy, Zologensma, at the cost of $2.1 million dollars. It alters the underlying genetic cause of spinal muscular atrophy and may permanently stop the disease. This therapy is only available in The United States of America…. 

Another available medication in the marketplace is Spinraza - the first FDA-approved therapy to treat SMA. The cost is US$750,000 in the first year and US$375,000 annually after that in the United States as of 2019. In the long run, this medication will cost way more than Zologensma, as this is a lifetime treatment.

Our daughter only has 7 months to be eligible for that treatment as this therapy is not used after 2 years of age.

These medications are not affordable for majority of families around the world, not even wealthy families. There is nothing worse than realizing, that there is an effective cure to our baby’s disease that can save her life, but we simply do not have money to get this for her.

In the past month, we have been reaching out to multiple SMA foundations around the world. Sadly, we did not receive any response.   

We don't have any choice but to turn to people around the world for help. We fully realize that this amount may seem unachievable but as loving parents we do not have a right to lose our hope and give up on our baby. 

Your help/advice/support would give us so much hope, relief and reassurance. Our family would be forever grateful to you. We only have few months until Ayana loses her ability to eat and breath and we are truly heartbroken, desperate but still… full of hope…  

Documents

https://docs.google.com/document/d/1n3O6XRiz8JukulLhhYNwMTlaoV3yQ62NBpwipVoWE4E/edit?usp=sharing
https://drive.google.com/open?id=16KuX-NOP48jUoSJHkGZ5by-hf8DUSxnJ

Best, 
Regina &Ulan
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See all

Organizer

Kamila Choromanski 
Organizer
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