Family risks delaying daughter's treatment if fundraising isn't completed in the coming month

One injection can stop the progression of spinal muscular atrophy — a dangerous genetic disease that leads to muscle weakness, writes Onliner.by.

Katya was featured in the spring of 2024. Even then, the 6-year-old girl "forgot how" to walk and moved on her knees — this is one of the consequences of the disease. After being diagnosed with SMA Type II, doctors warned the parents: the disease would progress and affect swallowing and breathing. This news was a real shock for the family. By that time, the parents were already raising a special child: Katya's older brother, Daniil, has autism and is completely dependent on his loved ones.

For almost two years, the family and volunteers have been fundraising for life-saving therapy for Katya Vinogradova from Kobryn. The main goal is the drug "Zolgensma", costing slightly over $1.8 million. One injection can stop the progression of spinal muscular atrophy — a dangerous genetic disease that leads to muscle weakness.

In the case of SMA, several treatment options exist. Firstly, lifelong supportive therapy — the cost of each course is several thousand dollars. The second option is the acquisition of the drug "Zolgensma", costing about $1.82 million. In this case, one injection is sufficient to halt the progression of the disease.

Since last spring, Katya has also been receiving supportive therapy. Thanks to it, the girl has become stronger, but she still cannot stand even with support. As for the fundraising for the life-saving injection, which costs almost $2 million, it has been ongoing for almost two years. According to the latest information, 89% has been collected — almost $200,000 is still needed to close the gap.

Павялічыць

Oksana and the team of volunteers (Katya's father Vyacheslav passed away last winter) are doing everything possible to close the fundraising as quickly as possible. According to their calculations, if the pace is maintained, the entire amount could be collected in three months. But Katya doesn't have that much time.

It's all about the weight: in Dubai, "Zolgensma" is administered to children weighing no more than 21 kilograms — Katya's weight has already reached 19.7.

— The weight fluctuates: sometimes it increases, sometimes it decreases. And we are very afraid of this, — Katya's mother told an Onliner journalist. — Despite the diet, we are still gaining weight, so there's only a 1.3-kilogram margin. The difficulty also lies in the fact that for the past month and a half, we haven't been home: we're undergoing rehabilitation. In autumn, Katya and Oksana went for a consultation in Moscow, where a doctor from Dubai also came. The medic confirmed that the expensive drug is suitable for Katya; this was also shown by the antibody test (which determines if the treatment will be effective). The family is expected at the Dubai clinic already in January. But to accomplish this within the agreed timeframe, the mother says with bitterness, is unlikely.

Павялічыць

— Our fundraising is practically stalled now. Perhaps this is due to the holidays. Plus, the dollar exchange rate has risen… Of course, we are tired. But for Katya's sake, we are going to any lengths.

Information about the treatment can be found here

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