Baby Andrian was born in our big family 1year and 8 months ago. He is
our fourth child. He seemed to be completely healthy at the beginning
until he turned 4 months when we noticed that he still couldn’t roll
over. His muscles became weaker and weaker… It took us another 5 months
before the doctors diagnosed Andrian with Spinal Muscular Atrophy (SMA)
Type 1 that is caused by a mutation in the survival motor neuron gene 1
Back then the doctors told us that this most probably means our baby wouldn’t survive longer than the age of 2 because this disease will slowly impair his ability to breath…
We couldn’t accept this and started our own research. We found out that this type of SMA CAN BE CURED by medicine called Zolgensma. This medicine was created and registered in the USA in May 2019. It’s a one-time treatment that the baby must receive before he turns 2 years old. Detailed information about this medicine can be found here: https://www.zolgensma.com/
We also learned that this medicine is not financed either by the insurance companies in Russia or the government whilst being the most expensive medicine in the world. The cost of Zolgensma is 2,2M USD which is approximately 1,9M EUR. Luckily, nowadays Andrian can receive this treatment in Russia.
My name is Ekaterina Poleshuk. I’m a wife of Priest of the Russian Orthodox Church in a small village near Zelenograd. For us, a family with 4 children it’s impossible to be able to pay for this treatment. That’s why we decided to start a fundraising campaign to save our baby’s life.
I am kindly asking you to support our baby boy Andrian in being able to be cured with Zolgensma.
We are very thankful to everyone for every donation, how small that may be, you make to save our baby’s life!
Mum and dad of Andrian Poleshuk - Ekaterina and Dmitry Poleshuk