A 1-year-old Russian girl suffering from a rare neuromuscular disease has received an injection of what’s been dubbed the world’s “most-expensive shot,” thanks to online fundraising efforts led by her mother that drew donations from several celebrities. Milana Semenkova, who lives in Kaliningrad, has spinal muscular atrophy (SMA), a genetic diseases that cause weakness and wasting in the voluntary muscles, including impacting the ability to breathe.
To diminish the disease’s progression, Milana’s doctors prescribed an injection of Zolgensma, a new medication that does just that. The catch: a single injection of the medicine costs 162 million rubles, roughly $2 million U.S.
To help cover that cost, Milana’s mother, Victoria Kashuba began asking for donations on such well-known Russian social-media platforms as VK and Telegram.
Her appeal spread quickly, as her friends have contacts with several Russian celebrities, such as singer Olga Buzova, 34, singer and actress Anna Semenovich, 40, and actor Fyodor Dobronravov, 58, who all donated also spread the word about the campaign, which wound up going global.
The family said the needed amount was raised in a little over six months, and her delighted parents then ordered the injection. Milana, who will turn 2 at the end of August, received the shot in early July.
Her mother said Milana is suffering from some side effects from the shot, including vomiting, “but doctors say that is normal after the Zolgensma injection.”
She added that Milana will need another three injections of a related drug known as Nusinersen, which is marketed as Spinraza. The family said that trio of shots will cost an additional total of $1.5 million, which will necessitate another fundraising effort in the future.
She added: “I am trying to now help other kids who have the same disease, sharing their cases on my page and letting others know about the problem too.”
(Edited by Matthew Hall.)