Zolgensma treatment for Masha Fedotkina SMA1

This is an urgent fundraiser on behalf of parents of Masha Fedotkina, 11 month old baby girl from Russia, for Zolgensma (the most expensive drug in the world) treatment. All the funds raised will be transferred directly to the account designated for Masha's treatment. 

No amount is too small! Even small amounts get us closer to Masha's recovery, if there are a lot of us-it can make a huge difference!

Masha was born a healthy baby but couple months ago she has been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1). SMA is a disease which gradually takes away the ability to move, swallow, breathe… However, babies don’t loose intellectual ability. In majority of cases children with SMA1 (infant) type are not expected to live past their second birthday. Masha has already lost her ability to turn from back to tummy and from tummy to back, she has trouble holding her head straight for long periods, she never crawled even though she is 11 months old. This is all because of the broken gene.

But there is a cure now! Gene therapy medication Zolgensma was approved by FDA in the United States in May, 2019. The quoted price of treatment is $2,520,000. This medication is just one time injection and it changes the broken gene with the healthy copy. It needs to be done as soon as possible as it can only be used for children under 2 years old and the earlier it is done the less of her abilities Masha will lose. Unfortunately, unlike in the USA, Zolgensma is not covered by any insurance and the government is not registering as one of the treatments, that is why we are trying to raise the funds with the help of volunteers and using one of the Russian charity organizations to try raise the funds for this treatment.

Most recently 7 babies from Russia successfully raised the funds, so we are very hopeful we can do the same and give a gift of life to Masha! We can still see Masha grow up and live a normal life, but the time is running out and we must act as soon as possible. Please, if you have any questions, you can contact me directly and I will get an answer for you from Masha's mom. In addition, more information is on Instagram at @help.mashafedotkina - there are documents, pictures, videos, daily live videos etc.

All documents are available upon request.


Masha on Facebook: https://www.facebook.com/help.mashafedotkina/
Masha on Instagram: https://instagram.com/help.mashafedotkina?igshid=1hhidxu8pel54


You can also use one of the other methods to donate:

PayPal: [email redacted]

https://aleshafond.ru/children/masha-fedotkina

The recipient is Masha’s mother, Marina Nikonova:
Sberbank Bank: SWIFT-code SABRRUMMVH1 Account#: 40817840913008490575


‼️ВНИМАНИЕ‼️
Все карты и счета оформлены на маму - НИКОНОВУ МАРИНУ НИКОЛАЕВНУ ‼️

Сбербанк 2202200952913851

Росбанк 4405036636670538

Тинькофф 5536913839722044

ВТБ 24 5368290152851079

Qiwi +79009456012

РЕКВИЗИТЫ БАНКА 

Кор/счет 30101810600000000681
БИК 042007681
Счет получателя 40817840913008490575

РЕКВИЗИТЫ БАНКА 
SWIFT-code SABRRUMMVH1

Наименование банка ЦЕНТРАЛЬНО-ЧЕРНОЗЕМНЫЙ БАНК ПАО СБЕРБАНК г.Воронеж ул. Московский проспект 129/1
Счет получателя 40817840913008490575

Счет в ВТБ банке
Получатель: филиал номер 3652 ВТБ (ПАО) в г.Воронеже
БИК 042007855
Кор/счёт 30101810545250000855
Счёт получателя 40817810940414011124
ИНН 7702070139