After successfully raising $2.3 million for a life-changing injection and uniting the whole country in the process, six-month-old Dmytro Svichynskyi received the shot at the San Antonio Children’s Hospital in the U.S. on July 16.
Dmytro was born with Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the rare genetic disorder found in one of 10,000 babies born worldwide. The disease is regressive and often fatal, causing muscle weakness and breathing difficulties. It can be fixed with a single timely injection of Zolgensma, the world’s most expensive drug.
Dmytro will now undergo a two-month rehabilitation course.
His parents, Vitaliy and Maria Svichynsky, announced on Facebook that administering the drug in the US costs $250,000 less than in Ukraine.
Zolgensma is the first gene therapy approved for treating SMA. It functions by delivering a functional copy of an SMN1 gene in place of the defective one.
Saving Dmytro’s life was a race against time. When the fundraising campaign began he was four months old and needed to receive the treatment before he turned six months old in order for the drug to be effective. From flashmobs to online auctions involving public figures and volunteers, Dmytro’s parents employed every possible method to raise the necessary sum.
After they raised enough money to pay for the drug, Dmytro’s family went on to use their platform to raise awareness about spinal muscular atrophy and help other Ukrainian families in need of Zolgensma.
In their announcement, Dmytro’s parents reminded the Ukrainian Health Ministry that there are dozens of SMA families in Ukraine who need help.
Although there is no official registry of SMA patients in Ukraine, the National Assembly of People with Disabilities in Ukraine reported that as of 2020, there were 267 patients diagnosed with SMA, 90% of whom were children under 14.
