The state suggests Ksyusha's mother with SMA transfers the collected $1.8 million to the Children's Home. Volunteers are against it

On the social media of Ksyusha Moiseenko — a small girl with SMA, whom her mother left in an orphanage — volunteers published a letter that her mother received from the Ministry of Health.

It reported that a republican medical council had taken place, which decided: gene therapy with the world's most expensive drug (Zolgensma) cannot be administered to Ksyusha. As an alternative, the girl is currently offered 'Risdiplam' — a drug that slows down the deterioration of her condition and can slightly improve motor functions, supporting breathing. It does not cure SMA, but helps to control the disease. It must be taken lifelong.

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

Belarus does not officially purchase 'Risdiplam' — the drug will only be administered to the patient if they can acquire it themselves.

It should be added here that all four children of Nina Sankova (Ksyusha's mother) were removed from the family. The eldest daughter and youngest son are under temporary guardianship in another family, the second daughter lives with her father. The official guardian of Ksyusha (she was born third) is currently the chief doctor of the Children's Home.

A month ago, Nina said in an interview with 'Onliner' that almost everything had already been done at her home to get the children back — including Ksyusha. The woman assured that in a month, everyone would be with her.

But in reality, the situation is far from optimistic. Witnesses say that in the last six months, the mother has done nothing to put the house in order.

Now volunteers want to help with repairs and restore Nina's parental rights.

There's another nuance: when Nina tried to raise money for her daughter's treatment herself, she was accused of partially spending donations on herself. But the new fundraiser — the same one for $1.8 million — volunteers were also forced to open in the mother's name. They assured that the woman would not withdraw money and spend it on her own needs.

In its letter, the Ministry of Health proposes that Nina transfer the collected money to the Children's Home's account — and that the Children's Home itself then purchase the necessary medication for Ksyusha. Officials assure that the money will not be spent on anything else, only on Ksyusha's needs.

It is also noted that one can contact 'trustworthy funds': Belarusian Children's Fund, International Charitable Fund for Children's Aid 'Chance', Belarusian Union of Women or the republican public association 'Patriots of Belarus' (the latter was created to organize car rallies in support of Lukashenka after his loss in the 2020 elections).

Volunteers interpret this as the mother being offered to transfer the money either to the Children's Home's account or to the account of one of the funds. But it was probably meant that additional help could be sought from the funds.

Volunteers are categorically against such a turn of events. They believe that the medical council did not provide a clear scheme for the child's further treatment, nor did it conduct all the necessary diagnostics. They also demand guarantees for the targeted use of funds — all of them must be directed exclusively to Ksyusha's treatment. Because people donated specifically for this girl.

It is reported that volunteers have written an appeal to Natalia Kochanova — requesting a personal meeting and also calling for a review of the medical council's conclusions.

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