The family of Vitaliy Svichynskyi and Maria Svichynska has recently proved that there is nothing impossible for loving parents when it comes to the life of their son.
The two managed to raise over $2 million in about 80 days for the life-saving treatment of their son Dmytro, who was earlier diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the most severe type of this rare genetic disorder.
The disorder only gets worse over time without treatment and most children with this disease don’t survive past early childhood due to respiratory failure.
The family from Odesa, the Black Sea port city of 1 million people located 476 kilometers south of Kyiv, faced a tough deadline. Their son Dmytro needed a single dose of Zolgensma, the world’s most expensive drug and the first gene therapy approved for the SMA treatment, before he turned six months old. They started the fundraising campaign when Dmytro was around three months old.
Read more: Ukrainian family in battle to raise $2.3 million to save their son
They used every opportunity by launching campaigns and flashmobs involving volunteers and public figures to raise the needed sum.
On May 20, the family finally announced that the fundraising campaign was over.
“Friends, we made it! It’s just an incredible result that is hard to believe, but we have raised $2.05 million in 80 days!” the campaign’s Instagram post reads.
Although the family was initially set to gather $2.3 million, they later found a cheaper option for the treatment in the U.S. at the Children’s Hospital of San Antonio, Texas.
When the boy’s parents raised over 67% of the needed sum, an unknown benefactor donated the missing amount of money to save Dmytro.
“Nothing in the world compares to the happiness of parents who have a chance to save their child,” Svichynskyi wrote on Facebook.
Now that the parents raised the needed amount for their son’s treatment, they plan to help other Ukrainian families of children with SMA.
On May 26, Svichynskyi announced the foundation of the advocacy campaign aimed at making SMA treatment available in Ukraine. The initiative plans to hold negotiations with Swiss multinational drug company Novartis on the possible registration of Zolgensma in Ukraine. It will also advocate for the government to fund the drug purchase for children’s treatment.
“I believe that the Ministry of Health of Ukraine will not ignore our proposals and in the nearest future, we will move to close cooperation,” Svichynskyi wrote on Facebook.
The initiative also plans to advocate for the development of a national comprehensive and long-term program to support children with SMA and the disorder’s treatment protocol. They will also call for the launch of an electronic register of patients with SMA, which Ukraine currently lacks.
