A boy from Ternopil region wins SMA drugs in a lottery: it's the most expensive drug in the world
Little Arsenko Borys from the town of Skalat in the Ternopil region won the world's most expensive drug to treat severe genetic disease in a lottery organized by this drug's company manufacturer.
The boy's mother Nadiia Borys announced it, Ukrinform reports.
"It's a shock, a great miracle that our entire family hoped for, prayed daily for fate to have mercy on our child. The disease began to progress after a year. At 6 months he could still sit. But my son's hands were shaking. Then he couldn't sit on his own, fall, and needed support. We found out that there was a cure for the disease–spinal muscular atrophy–but it was terribly expensive: more than $2.5 million. We rushed to raise money but also registered for the lottery, which distributes such drugs every month. And here is the news. The drug befell Arsenchik. We can't believe that fate has taken pity on our child," the woman said.
According to her, the drug will arrive in Ukraine in at least a month. It'll be injected in one of Okhmatdyt's clinics in Kyiv.
The boy's mother informed that during four months, when Arsen's family announced the fundraising during various auctions and fairs on social media together with volunteers, more than 33 million hryvnias were collected. Funds came from different parts of Ukraine and from abroad.
"Today we announced the end of fundraising, once we were so lucky that we won the drug for free from the manufacturer. Yesterday lawyers called from there, confirmed the results of the lottery, said they would let us know when the drugs will have arrived. And when we get them, we'll give the raised money to children who also suffer from the same disease as Arsenchik," the woman said.
As Rubryka reported, on May 20, Dima Svichinskyi's parents, whose son was also diagnosed with spinal muscular atrophy, announced the end of the fundraiser. They managed to raise the necessary amount thanks to the contribution of an anonymous philanthropist.