Times are tough for everyone, but if you’re able to spare even an extra penny, please do so. Any amount counts and will help Dmytro and his family reach their goal of happy and healthy life for Dmytro. Also, please help by sharing this story widely to reach as many people as possible.
On November 30, 2020, Vitaliy and Maria Svichinsky became parents to a happy and apparently healthy baby boy, Dmytro. But after two months of life, Dmytro was diagnosed with SMA type I.
Dmytro’s parents had never heard of SMA before and were shocked to find out the devastating news. Unfortunately, the sum of funds needed to save little Dmytro’s life is colossal for an ordinary Ukrainian family; thus your donation will bring Dmytro and his family closer to their goal.
SMA is a rare genetic disorder caused by a mutation in the SMN1 gene. This leads to the death of motor neurons, cells that transfer signals from the nervous system to all the muscles in the body. As a result, SMA affects basic motor functions such as walking, arm and leg movements, swallowing, and breathing, though it doesn’t affect intelligence or mental abilities. As a result, SMA kids are locked inside a body that progressively loses the ability to move, swallow and eventually breathe, leading to death.
SMA affects one in 10,000 live births and cannot be cured. However, today patients are given treatment to prevent further progression, as any damage caused by the disease is irreversible.
Zolgensma is a new one-time gene therapy treatment for children under the age of 2. It replaces the missing SMN1 gene with a new, working copy that helps motor neuron cells work properly and survive. It’s currently the most expensive drug in the world at $2.3 million. It is not a cure since it does not reverse the damage already caused by SMA before treatment but it stops the progression of the disease in its tracks. It has by far shown the best results of any treatments to date. It is recommended that the earlier the patient receives the treatment, the better. Therefore, Dmytro needs to receive Zolgensma before the age of 6 months to prevent further impairment and to live a normal and happy life.
The goal is to raise enough funds for Dmytro to receive the gene therapy treatment, Zolgensma, to provide Dmytro with a normal childhood. A childhood where he will be able to play with his friends and classmates.
We are in a race against time to achieve this goal, so your prayers, positive thoughts, financial contributions, and/or shares of this fundraiser will tremendously help Dmytro. Every single contribution brings Dmytro closer to a new lease on life and the promise of a healthy future!
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