A Life Priced Over $2.9 Million: Fighting for an 11-Year-Old in Yekaterinburg

Fifth-grader Andrei Uvarov from Yekaterinburg is fighting a fatal diagnosis—Duchenne muscular dystrophy. This is a severe genetic disease that leads to progressive muscle weakness. The 11-year-old boy loves English, drawing, and computer games, and for now, he is not much different from his peers. Andrei is only slightly shorter than his classmates, walks on his tiptoes, and has difficulty climbing stairs.

He was diagnosed three and a half years ago, when no treatment existed; medications could only try to contain the symptoms. But in 2023, a life-saving drug appeared—Elevidys. The drug is administered once and is capable of stopping muscle degeneration, extending patients« lives. Without therapy, patients with Duchenne muscular dystrophy live at best until age 25.

In Russia, the state-backed Krug Dobra (Circle of Kindness) fund purchases Elevidys, and boys up to the age of nine years and one month receive it for free. But Andrei does not qualify due to his age. The only option for him is to receive the drug abroad at his own expense. The child has already been examined in the UAE, and the drug is suitable for him. The medication can be administered as long as the child can still walk. But the cost of this salvation is estimated at $2.9 million (over 225 million rubles).

In a video, the boy«s mother, Anna Kholodnaya, told E1.RU how she is fighting for her son»s life.

She started a blog where she details the fundraising progress and Andrei«s rehabilitation. He works out on exercise equipment daily, uses a standing frame and special orthopedic boots (tutors) to preserve his ability to walk for as long as possible. He also swims in a pool—the only sport available to him. Thanks to his family»s efforts and his own courage, the disease is progressing less aggressively, and he studies in a regular class.

To date, slightly more than six million rubles (about $66,000 at current rates) has been raised for the medicine.

Earlier, we provided a detailed account of Andrei«s story. And a year ago, four-year-old Styopa from Yekaterinburg received the life-saving drug.

Also read an interview with a doctor about another genetic disease—spinal muscular atrophy.