A record $300,000 was raised in two days for Ksenia from Mogilev's life-saving injection. Her mother gave her up to an orphanage, but strangers are fighting for the child's life
Such a collection speed has never been seen in Belarus, and it's not about large donations, but thousands of small transfers. However, the fundraiser continues, as the cost of the necessary injection is $1.8 million.
Ksenia Moiseenko is three and a half years old. She is a small girl from Mogilev, with big eyes and light hair. In 2024, Ksenia was diagnosed with type 2 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 her arms and legs, then it becomes difficult to sit, hold her head, swallow food, breathe. And eventually — death.
There are medicines in the world that can stop the disease. This is the gene therapy Zolgensma, perhaps the most expensive medicine in the world. The child is cured literally with one injection. The problem is that its cost is about $1.8 million. And the Belarusian state is not yet ready to include the rescue of children with SMA in the free medicine program.
A girl who has no one to knock on all doors for her
In most similar stories, parents fight for the child's life: they launch fundraisers, create social media pages, look for bloggers, and organize events.
Ksenia's uniqueness lies in the fact that she lives in a Mogilev orphanage. Her father died. And her mother couldn't handle the burden of the situation and gave the girl to a state institution.
There's no help to expect from parents, but other people are fighting for Ksenia. A community of volunteers quickly formed around Ksenia. They created chats, groups, and pages on social media where they coordinate assistance.
It's not just about fundraising. Some help with disseminating information. Some look for foundations and organizations. Some are ready to write letters to companies. Some offer to organize charity events.
New ideas constantly appear in the chats. For example, a charity event is planned in Polotsk on March 14 at a pizzeria: a portion of the pizza sales will go to help Ksenia.
Others suggest launching a social media challenge, for instance, giving up coffee, sweets, or certain purchases for a few weeks, and donating the saved money to the fundraiser.
Someone is making videos for social media, including in English.
Ksenia, naturally, does not yet understand what is happening around her, and why thousands of people are discussing her story in chats and trying to find a way to help. But these days it's really hard to open Belarusian TikTok or Instagram and not come across a repost of information about the girl.
$300,000 in two days
In the last two days, about $299,253 has been raised for the fund. For Belarusian charity campaigns, this is an abnormally high speed. There have been no analogues of such an informational — and monetary — avalanche so far.
It is noteworthy that these are not large donations, but thousands of small transfers: 5-10-20 rubles or dollars. In the comments, people often write: "Sorry it's not much."
Nevertheless, from these "small" transfers, $335,000 has already been collected.
The fundraiser is supported not only by Belarusians. In the comments, you can see people from the European Union, the USA, Kazakhstan, Russia.
Why the injection costs almost two million
Zolgensma is not an ordinary medicine. It is gene therapy that works at the DNA level.
In SMA, the SMN1 gene, which is responsible for producing the protein necessary for the life of motor neurons, does not work in a person. The drug delivers a copy of the healthy gene to the cells, and the body begins to produce the necessary protein. In fact, it is an attempt to correct a genetic error. The injection is given only once in a lifetime.
The cost of such treatment is so high because it was developed for decades, its production is very complex, and the drug is intended for very rare diseases. Pharmaceutical companies want to recoup the money spent, and for now, do not offer discounts even for such exceptional cases.
Almost out of time
In Belarus, this injection can only be given while the child weighs up to 13.5 kilograms. Ksenia currently weighs about 12.9 kg. This means that less and less time remains. That is why the fundraiser is called ultra-urgent.
Initially, treatment in Dubai was considered, but now it is practically unrealistic: due to the tense situation there, some patients were even forced to return home prematurely.
Therefore, doctors plan to administer the injection in Minsk — if the money can be raised.
Why the fundraiser goes to the mother's accounts
Many people wonder: why does the fundraiser go to the mother's accounts if Ksenia lives in an orphanage? The reason is the law. The girl's mother has not been deprived of parental rights, and although she gave up her daughter, she legally remains the child's sole legal representative.
State institutions, orphanages, or guardianship authorities do not have the right to open accounts for multi-million dollar fundraisers for gene therapy. By law, only a legal representative can do this.
If we wait for court proceedings and the appointment of a new guardian, it could take months. And Ksenia simply won't have time to receive the injection.
To eliminate risks, volunteers organized a control system: they receive bank statements, publish daily reports, and all money after the collection will be transferred to the clinic or the drug manufacturer.
The fundraiser continues, and each of us can help.
Details for assistance
MTS (balance top-up): +375292375886
Belarusbank:
BYN: BY21 AKBB 3134 0000 0237 7007 0000
USD: BY45 AKBB 3134 1000 0149 9007 0000
EUR: BY03 AKBB 3134 2000 0128 5007 0000
RUB: BY46 AKBB 3134 3000 0142 1007 0000
Comments
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