Yaroslav is a happy and active boy of 18 months and is our second child. His first six months of life were pure joy for all of us - for myself, my husband Bogdan and our daughter Alexandra. But after six months something went wrong. I noticed that my son was not as active as before and his muscle tone appeared to have weakened.
After visiting several physicians, in June of 2019 our little boy was diagnosed with a deadly disease - spinal muscular atrophy type 1 (SMA). Spinal muscular atrophy is a genetic disease characterized by severe and progressive muscle weakness and hypotonia resulting from the degeneration and loss of the lower motor neurons in the spinal cord. Untreated and without a respiratory support, babies diagnosed with SMA type 1 do not generally survive past two years of age.
In May 2019 a new genetic treatment was developed in the USA. It is a unique onetime treatment called Zolgensma and also the most expensive in the world. The cost is 2,125,000 US dollars or 1,960,000 Euros. Unfortunately, in the Russian Federation we are unable to get any government support to cover this treatment. But this will not stop us from trying our best to help Yaroslav lead a normal and healthy life.
Everyday Yaroslav fights this disease through exercises and medical treatment that are extremely difficult. Together with our friends, we are searching for any possible way to help our son survive.
The mission of our fund raising campaign is to cover the cost of the Zolgensma treatment. It’s a one time gene therapy treatment.
There is more information about Yaroslav and the campaign updates on our website http://yaroslavsma.ru/en.
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Please help us save Yaroslav! Every donation is extremely valuable and brings us closer to our goal – saving our son’s life.
Daria, Bogdan and the team.