Help Sofia Darbinyan
Donation protected
My name is Anastasiya Darbinyan. I am the mother of three. My third daughter Sofia was born on 23rd of Feburary, 2020 and has been diagnosed with a terminal illness: Spinal muscular atrophy type 1 (SMA type 1).
It is a genetic disease which is transferred to the child from two bearers of the damaged gene. It is transferred only in 25% of cases. Our older daughters, Elina and Milla, are healthy. We couldn't even guess that me and my husband are bearers of such a gene.
The nature of this disease appears to be that due to the defect in the SMA1 gene muscles are slowly atrophying. First, a baby cannot hold its head, then problems with breathing and swallowing start to appear and then the heart stops. Earlier the disease appears, faster it develops. Our Sofia got first signs in 1.5 months. Until recently, there was no treatment for this disease and kids who were diagnosed with it were given a status "needs palliative help" and they were sent to their homes. To die.
But now the medication have appeared in the world which can be used to treat this genetic disorder. The medication is called Zolgensma and it is the most expensive drug in the world. It is even put in The Guiness book. Zolgensma fixes the defective copy of SMA1 gene and that gene starts to work as it should, making the required quantity of motor neurons. After Zolgensma there is no need for future treatments and a child can live a normal life and thrive as any other child without a condition.
Zolgensma is only registered in the US, Israel, Germany and France, but not in Russia. That fact doesn't allow Russian healthcare system to purchase this medication and treat patients by state care programs. In the US, the state pays for Zolgensma treatment. Due to COVID-19 and if there is life threatening situation one can buy Zolgensma from the manufacturer and bring it in Russia.
Veltischev Research and Clinical Institute for Pediatrics has the experience and can treat with this drug. It costs less than the treatment abroad. And it is only one intravenous injection. But it costs $ 2,125 million dollars. This is beyond belief an incredible sum, but we have no choice.
The injection should be done before reaching 6 months of age. In that case Sofia can maintain existing and develop new motor functions. She will be able to sit without external support and there is even a probability that she will be able to walk. If there is no treatment, muscles will further atrophy and she can lose the ability to swallow and to breathe.
This disease cannot be turned around as the part of muscles has already atrophied, but it is still a small part. Luckily, the human body has enough reserves and faster we stop the disease more chances my daughter has for the productive life.
At this moment there is only ONE THING that can change Sofia's fate, and we are asking for your help. We are asking you to help save Sofia.
Sofia can live and thrive and it will be thanks to you. But it has to be now. We have a month and a half at most.
We are forever grateful to you for what you have done and will do for our daughter Sofia.
HOW YOU CAN HELP TODAY
1. Donate what you can, no amount is too small
2. Share this fundraiser https://www.gofundme.com/f/help-sofia-darbinyan on all social media with your friends and family
HOW ELSE YOU CAN HELP
GiveButter
https://givebutter.com/HelpSofiaSMA
PaySend: 4274 3200 4159 5656 (Darbinyan Vladimir Eduardovich)
PayPal: http://paypal.me/helpsofiadarbinyan
HOW YOU CAN HELP FROM RUSSIA
Сбербанк онлайн 79232350409
Сбербанк 4274 3200 4251 3179
Тинькофф 5536913840672030 (Darbinyan Anastasiya Valerevna)
Папа: Владимир Эдуардович Дарбинян
Сбербанк онлайн 79232576342
Сбербанк 4274 3200 4159 5656
Яндекс Кошелёк: 410011740649836
NONPROFITS IN RUSSIA
"Сбереги Жизнь"
"Кораблик"
MORE INFORMATION ABOUT SOFIA'S FUNDRAISER IN RUSSIA
Sofia's website
https://sofiadarbinyan.ru/
on Facebook
https://www.facebook.com/helpsofiadarbinyan
on Instagram
@helpsofiadarbinyan
Together we can make a difference and save Sofia's life!
It is a genetic disease which is transferred to the child from two bearers of the damaged gene. It is transferred only in 25% of cases. Our older daughters, Elina and Milla, are healthy. We couldn't even guess that me and my husband are bearers of such a gene.
The nature of this disease appears to be that due to the defect in the SMA1 gene muscles are slowly atrophying. First, a baby cannot hold its head, then problems with breathing and swallowing start to appear and then the heart stops. Earlier the disease appears, faster it develops. Our Sofia got first signs in 1.5 months. Until recently, there was no treatment for this disease and kids who were diagnosed with it were given a status "needs palliative help" and they were sent to their homes. To die.
But now the medication have appeared in the world which can be used to treat this genetic disorder. The medication is called Zolgensma and it is the most expensive drug in the world. It is even put in The Guiness book. Zolgensma fixes the defective copy of SMA1 gene and that gene starts to work as it should, making the required quantity of motor neurons. After Zolgensma there is no need for future treatments and a child can live a normal life and thrive as any other child without a condition.
Zolgensma is only registered in the US, Israel, Germany and France, but not in Russia. That fact doesn't allow Russian healthcare system to purchase this medication and treat patients by state care programs. In the US, the state pays for Zolgensma treatment. Due to COVID-19 and if there is life threatening situation one can buy Zolgensma from the manufacturer and bring it in Russia.
Veltischev Research and Clinical Institute for Pediatrics has the experience and can treat with this drug. It costs less than the treatment abroad. And it is only one intravenous injection. But it costs $ 2,125 million dollars. This is beyond belief an incredible sum, but we have no choice.
The injection should be done before reaching 6 months of age. In that case Sofia can maintain existing and develop new motor functions. She will be able to sit without external support and there is even a probability that she will be able to walk. If there is no treatment, muscles will further atrophy and she can lose the ability to swallow and to breathe.
This disease cannot be turned around as the part of muscles has already atrophied, but it is still a small part. Luckily, the human body has enough reserves and faster we stop the disease more chances my daughter has for the productive life.
At this moment there is only ONE THING that can change Sofia's fate, and we are asking for your help. We are asking you to help save Sofia.
Sofia can live and thrive and it will be thanks to you. But it has to be now. We have a month and a half at most.
We are forever grateful to you for what you have done and will do for our daughter Sofia.
HOW YOU CAN HELP TODAY
1. Donate what you can, no amount is too small
2. Share this fundraiser https://www.gofundme.com/f/help-sofia-darbinyan on all social media with your friends and family
HOW ELSE YOU CAN HELP
GiveButter
https://givebutter.com/HelpSofiaSMA
PaySend: 4274 3200 4159 5656 (Darbinyan Vladimir Eduardovich)
PayPal: http://paypal.me/helpsofiadarbinyan
HOW YOU CAN HELP FROM RUSSIA
Сбербанк онлайн 79232350409
Сбербанк 4274 3200 4251 3179
Тинькофф 5536913840672030 (Darbinyan Anastasiya Valerevna)
Папа: Владимир Эдуардович Дарбинян
Сбербанк онлайн 79232576342
Сбербанк 4274 3200 4159 5656
Яндекс Кошелёк: 410011740649836
NONPROFITS IN RUSSIA
"Сбереги Жизнь"
"Кораблик"
MORE INFORMATION ABOUT SOFIA'S FUNDRAISER IN RUSSIA
Sofia's website
https://sofiadarbinyan.ru/
on Facebook
https://www.facebook.com/helpsofiadarbinyan
on Instagram
@helpsofiadarbinyan
Together we can make a difference and save Sofia's life!
Organizer
Yana Mckillop
Organizer
Fontvieille, Monaco
