Our nonprofit Birds for Sofia is helping Ukrainian children with rare diseases in this difficult time.
I am a founder of the Birds for Sofia Foundation and today I would like to raise funds on behalf of the Kyryk family to benefit their son, two-year-old Max Kyryk, a boy from Kyiv, Ukraine.
Max was born on May 28th, 2020. In the first year of his life, he developed normally.
However, when the time came, he never learned how to walk.
Irina and Petro, Max's parents took Max for a few rehabilitation courses to improve his muscle tone. There were some improvements but Max still had a hard time keeping his balance.
On March 30, 2021, Max's father, Petro, got into a terrible accident and got seriously injured. He became disabled and constantly requires rehabilitation courses himself.
In one of the rehabilitation visits, quite by accident, Petro's doctor noticed Max and suspected the inheritable condition. The genetic testing confirmed his suspicion.
Max has a mild form of spinal muscular atrophy or SMA.
At the moment Max is still walking but has a poor balance (duck gait). Soon he will lose this ability. Without treatment patients with SMA slowly deteriorate due to a lack of SMN1 protein, responsible for muscles in the human body.
At first, Max will stop walking, then it will be difficult to hold objects in his hands, any flu or virus can be dangerous since it can affect his lungs and he will stop breathing on his own :(
Now Max is at the age when SMA can be stopped its progression. The treatment exists, it is once in a lifetime infusion of gene therapy called Zolgensma, but the price tag of such treatment is unbearable, it costs $1.8M per life-saving injection.
With the war in Ukraine, Max's parents became refugees and lost their income.
It is hard to fundraise from abroad and rely on total strangers to help.
Birds for Sofia Foundation is asking everyone who will read Max's story to help us spread the word about this handsome toddler. Max deserves a chance at life and a better future without physical limitations.
Zolgensma will help to restore his muscle tone, he will be able to walk and live a life of a normal kid without a major disability.
Please share this fundraiser with everyone you know.
Let's save Max from Ukraine together!
Max is the only child in his family. He means everything to his parents and grandparents.
Max's family will be forever grateful for this gift of life!
WHERE YOUR MONEY GOES:
All donations will be sent directly to Med Care Hospital, Dubai (UAE)
The doctors from Med Care Women and Children Hospital evaluated Max and ready to start his treatment once the fundraiser is closed.
MORE INFO ABOUT BIRDS FOR SOFIA
We support children diagnosed with rare, inheritable diseases worldwide. We help families from countries where insurance or governmental health assistance programs do not cover the cost of