208 million rubles have been raised for the treatment of a nine-year-old boy from Dagestan.
208 million rubles have been raised for a drug to treat a nine-year-old boy with Duchenne muscular dystrophy. A significant amount was raised at a charity iftar in Kaspiysk.
As reported by the "Caucasian Knot," by the end of February, 73 million rubles had been raised for the treatment of a boy with Duchenne muscular dystrophy. A total of 230 million rubles are needed for the Elevidis injection. The fundraiser's organizers said he hadn't received assistance from the state program and expressed hope that the fundraiser would be completed before the end of Ramadan.
The boy's family had hoped to receive the medication under a quota. "At the end of 2023, we learned that the drug Elevidis, priced at 230 million rubles, had become available in America and Europe. Russia began purchasing it in 2024, but only for children under six. We weren't included in that category at the time. Then, age restrictions were raised abroad. We expected them to expand ours as well. They didn't announce a fundraising campaign, as the amount was daunting. We all expected to be able to obtain the medicine under a quota," Sapa quotes the boy's mother as saying.
In May 2025, the age restrictions were expanded, allowing children up to 9 years and 1 month to receive the medicine. At the time, he was 9 years and 20 days old. The family was turned down, claiming more time was needed to deliver the medicine. For the next six months, the boy's family appealed to wealthy individuals and organizations for help, but was rejected everywhere. In January, the boy's parents decided to launch a fundraiser. The first to come forward were two young women with previous experience in fundraising. Thanks to them, all of Dagestan learned about the disease. To date, 208 million rubles have been raised.
"We're a simple family; we didn't expect such a response. It was so unexpected for us. It's a true miracle," says the child's mother.
A charity iftar was also held for the boy in Kaspiysk, the Dagestan State Vocational School reported today.
Entrepreneurs and volunteers gathered to help the child. Together, they set a long table, and everyone could enjoy pilaf, fruit, and a variety of sweets and drinks. The activists decorated water bottles with special stickers containing the bank account details to which funds could be transferred for the child in need. Thanks to our joint efforts, we were able to attract a large number of caring people and raise a significant amount of money.
"Caucasian Knot" also wrote that 230 million rubles were needed to treat a nine-year-old boy from the Suleiman-Stalsky district with Duchenne muscular dystrophy. 70 million were raised in six months, and another 160 million were raised in five days.
Duchenne disease (Duchenne muscular dystrophy) is diagnosed in approximately one in 3,500 to 4,000 boys and is characterized by progressive muscular dystrophy that manifests itself in early childhood and leads to the inability to walk as early as the second decade of life and, in most cases, to death in the second or third decade of life, he said earlier. "Caucasian Knot" correspondent, pediatrician Evgeny Zolotov.
"The disease is caused by a change (mutation, most often a deletion or duplication) in the dystrophin gene, located on the X chromosome. The gene that causes the disease is located on the X chromosome, and therefore the disease is much more pronounced in boys, since they only have one X chromosome," he noted. According to him, this is a very rare and narrow specialization among doctors.
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