"Feeling great": Ksenia with SMA, for whom Belarusians raised $1.8 million, still has a chance for the long-awaited injection

Ksenia Maiseenka. Screenshot of a video on Instagram "Mogilev — my city"

Ksenia lives in the Mogilev Specialized Children's Home for children with organic central nervous system damage and mental disorders.

The head doctor of the children's home, Yulia Padaliakina, spoke about the girl's condition on Instagram.

— Ksenia feels great, she's in a wonderful mood. She underwent a course of medical rehabilitation at the Mogilev Regional Children's Hospital. Next week, she is planned to be transferred to the republican center "Mother and Child" to have blood drawn for antibodies and to resolve the issue of further administration of gene replacement therapy.

There is a result from the treatment and rehabilitation carried out. According to the doctor, the girl's condition is stable, positive changes are visible both in her movements and in how confidently she sits.

The posted video shows the girl sitting in a wheelchair in a beautiful dress, smiling, eating a waffle, and holding a package of gifts tightly (recently, doctors noted that Ksenia had lost the ability to sit independently and hold her head).

Reminder: Ksenia Maiseenka from Mogilev is three years old. In 2024, the girl was diagnosed with spinal muscular atrophy type two (SMA). This is a rare genetic disease in which neurons responsible for movement gradually die.

Muscles become weaker and weaker. The child loses strength, first in the arms and legs, then it becomes difficult to sit, hold her head, swallow food, breathe. And then — death.

There are medicines in the world that can stop the disease. This is Zolgensma gene therapy, perhaps the most expensive medicine in the world. The child is cured literally after one injection. The problem is that its cost is about $1.8 million. And in Belarus, this treatment is not included in the free healthcare program.

The peculiarity of the little girl's situation is that she lives in a Mogilev orphanage. Her mother was left alone, couldn't cope with the burden of the situation and surrendered the girl.

In fact, there was no one to fight for Ksenia — until volunteers learned about the seriously ill girl and started an urgent fundraising campaign.

As a result, an astronomical sum was collected in record time — within a month. No similar fundraising effort in the history of Belarus had happened so quickly.

But it unexpectedly turned out: it was impossible to give the life-saving injection urgently.

In spring, a republican medical council was held at the RSPC "Mother and Child". The official conclusion noted that Ksenia currently cannot stand or sit independently (according to accompanying persons, she could sit before), does not crawl, cannot lift her head or hold it when lying on her stomach.

It should be noted that before the medical council, Ksenia was hospitalized with pneumonia — the illness became an additional burden on her body.

Zolgensma gene therapy should be administered as early as possible — while the child retains as many motor skills as possible. If Ksenia's mother had started fighting for her daughter's medicine immediately after the diagnosis became known in 2024, there would have been more opportunities.

Belarusian doctors assessed Ksenia's condition and unanimously decided that her window of opportunity was lost. At that moment, administering gene therapy posed more dangers than potential benefits. The council's decision was as follows: gene replacement therapy is currently not indicated for the patient.

In this situation, in addition to various examinations, rehabilitation, and daily therapeutic exercises, Ksenia was also recommended to continue pathogenetic therapy with "Risdiplam" (given that the girl's representatives have three vials).

"Risdiplam" is a drug that slows down the deterioration of the condition and can slightly improve motor functions, supporting breathing. It does not cure SMA but helps control the disease. It must be taken for life.

This drug is also very expensive: the cost of one vial can reach $11,000. According to doctors' calculations, Ksenia currently needs 19 vials of "Risdiplam" per year.

Meanwhile, the Ministry of Health proposed to Ksenia's mother to transfer the collected money to the Children's Home account — so that it would then purchase the necessary medicines for the girl itself. Officials assured that the money would not be spent on anything else, only on Ksenia's needs.

But the volunteers were not going to give up. They demanded that the medical council be convened again and intended to defend their position through Natalya Kochanova.

And, as we can see, the process has moved forward. Ksenia now has a chance to receive the life-saving injection.

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