Ksyusha with SMA finally decided to get the life-saving injection. Volunteers are raising money for apartment rent during quarantine

Ksyusha Maiseenka. Screenshot of a video on the Instagram page "Mogilev - my city"

The long-awaited second medical consultation took place on June 4. Doctors confirmed positive dynamics against the background of the therapy Ksyusha is receiving (this refers to "Risdiplam" — the cost of one vial can reach 11 thousand dollars).

Finally, the results of the tests performed in the Netherlands have arrived: they confirm that by all indicators, Ksyusha is ready for gene replacement therapy. The plan is to administer Zolgensma, for which Belarusians collected 1.8 million dollars in record time, in Belarus.

Soon, the collected money will be transferred to the account of the RSPC "Mother and Child", which will then order and pay for the most expensive medicine in the world.

Volunteers have announced an additional fundraiser for renting an apartment in Minsk for Ksyusha and her mother Nina — the girl will live near the RSPC "Mother and Child" for a month (in quarantine before the injection). Money can only be withdrawn from the main account for essential treatment.

It is planned that the mother will be with her daughter during this difficult period.

Questions arise as to how this will be possible from a legal point of view. Firstly, Ksyusha's mother is restricted in her parental rights (as she left her daughter in an orphanage).

Secondly, the state compulsorily employed the woman as a milking machine operator so that she could compensate for the costs of maintaining her children (all four of Nina's children do not live with her). In such a situation, the employer is obliged to control the daily attendance of obligated persons at work, jointly with internal affairs bodies and bodies for labor, employment, and social protection.

But volunteers claim that there is a possibility for Nina to accompany Ksyusha to the RSPC.

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

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

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

In fact, there was no one to fight for Ksyusha — until volunteers learned about the seriously ill girl and launched an urgent fundraiser.

As a result, a colossal sum was collected in record time — within a month. No similar fundraiser in the history of Belarus has ever happened so quickly.

But then, unexpectedly, it turned out that it was impossible to administer the life-saving injection immediately.

In spring, a republican consultation was held at the RSPC "Mother and Child". The official conclusion noted that Ksyusha currently cannot stand or sit independently (according to her caregivers, 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 consultation, Ksyusha 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 Ksyusha's mother had started fighting for the medicine for her daughter immediately when the diagnosis became known in 2024, there would have been more opportunities.

Belarusian doctors assessed Ksyusha's condition and unanimously decided that her window of opportunity had been lost. At that moment, performing gene therapy carried more risks than potential benefits. The consultation's decision was: gene replacement therapy is currently not indicated for the patient.

In this situation, in addition to various examinations, rehabilitation, and daily therapeutic exercises, Ksyusha was also recommended to continue pathogenetic therapy with "Risdiplam".

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

And, as it turns out, caring people managed to ensure that the little girl finally received the life-saving injection.

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