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By Published April 17 at 7:37 pm The family of Maria Svichynska and Vitaliy Svichynskyi hold their newborn son Dmytro, who was diagnosed with a rare genetic disorder Spinal Muscular Atrophy (SMA). The parents are raising $2.3 million for their son s disease treatment with Zolgensma, known as the world’s most expensive drug. Life is the cost of one injection: a little boy from Odesa will become the third Ukrainian child who will receive the world’s most expensive injection. Such children in Ukraine are called emoticons. They got this nickname because their diagnosis is spinal muscular atrophy (SMA). Despite this very cute nickname, spinal muscular atrophy has been called the number one killer of hereditary diseases. One out of 6,000-10,000newborns will be born with SMA. Half of these children will die before they turn two years old, but the disease can make it ....
on social media The son of Vitaliy Svichynskyi and Maria Svichynska was nearly two months old when he suddenly started to lose the ability to move. The family soon learned their baby boy Dmytro was born with Spinal Muscular Atrophy (SMA) Type 1, the most severe type of the rare genetic disorder found in one of 10,000 babies born worldwide. The disorder only gets worse over time without treatment, causing muscle weakness and affecting a child’s movement and breathing abilities, often leading to death. The only medicine that can change that is Zolgensma, the world’s most expensive drug and the first gene therapy approved for the SMA treatment. ....