US$125.00raised of $2,234,031.00 goal
Arseniy has SMA (Spinal muscular atrophy Type 1). With this disease, children can't survive more than 2 year. One injection of Zolgensma can save his life. But it's extremly expensive. Over $2.2 Million. And time is running out.
Arseniy was born on Oct, 24th, 2019 in Russia. He was a healthy child, pregnancy was without any problems. All medical tests and ultrasound were good.
When Arseniy was 1 month we noticed that he couldn't raise legs and clench his fists.
Vitamins, massage, electrophoresis didn't help him.
Other children of this age are very active, they can lift a head, but Arseniy wasn't active and couldn't lift his head.
We took a genetic test and got to know that Arseniy had SMA (spinal muscular atrophy, type 1).
He was already 2 month old at this moment.
We felt like the ground had dropped out from under us. It was very difficult to accept this fact. What could we do? Who could help us? We didn't know the answers.
Children having SMA, type 1like Arseniy can't live more than 2 years.
In the age of 4 months Arseniy got disability. I couldn't believe that my son was a disabled person, that his name was written in documents about disability. Why? Why we?
We accepted our fate. Almost a year we've been living with this 3 letters - SMA and try to value every our day.
Arseniy gets medicine, called Risdiplam within pre-approval access programme. Now it is free, but it is only for one year. Then it won't be free.
With the help of Risdiplam Arseniy's hands became stronger, now he can flex his legs. My son can hold toys, neck muscles are stronger too.
But unfortunately, my baby can't lift his head, can't sit, can't turn his body. He has no strength. But he is alive now and this is the most important thing.
We learned how to use medical equipment. Spinal muscular atrophy became for us not only diagnosis, but it also became our lifestyle.
We started fundraising 1 month ago because we couldn't get an invoice on Zolgensma for a long time. Some hospitals even refused us.
We hope that miracle will happen for Arseniy
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*NOTE: All donations go directly to Arseniy's mother Paypal - [email protected] (Yana Likhachova), SMA Kids doesn't manage directly or have access to any funds donated through this platform
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