How Aryna Rudnitskaya — the first girl with SMA for whom Belarusians themselves raised $2 million for medicine — lives now
Exactly five years ago — in May 2021 — little Aryna from Brest received a Zolgensma injection. Did it help the girl?
Aryna Rudnitskaya. All photos here and below are from her mother Katsiaryna's Instagram
Aryna was born in Brest and initially developed like a normal child. But when the girl was one year and four months old, doctors diagnosed her with a terrible disease — spinal muscular atrophy type 2. It turned out that Aryna's parents and their older son have a "broken" gene — but they are not ill themselves.
The Rudnitski family
Without treatment, a child with such a diagnosis first loses motor activity in the legs, then in the arms, then the body, swallowing muscles, and finally, breathing muscles atrophy.
The genetic disease can be stopped by the drug Zolgensma, which is the most expensive in the world. The injection needs to be given only once (and the earlier, the better), but it costs over $2 million.
Of course, for a Belarusian family, this is an astronomical sum. Aryna's parents urgently launched a fundraising campaign. At that time, four children in Belarus had already received Zolgensma injections — but all of them got this opportunity through a lottery.
Aryna became the first girl in Belarus for whom the world's most expensive drug was purchased precisely with donated money. And the first one to receive Zolgensma in our country.
The fundraising took about four months, but there was a nuance: the parents managed to collect about $350,000, and the rest was donated by "Savushkin Product", where Aryna's parents worked at the time.
Of course, the story did not end with the miraculous injection — it was followed by a long rehabilitation. Katsiaryna — Aryna's mother — maintains an Instagram blog about their family's life.
On the day that marked five years since the injection, Katsiaryna made a video and shared what the girl can do now.
Unfortunately, Aryna cannot walk at the moment. But she moves around very actively, cheerfully climbs onto the sofa or a chair to eat at the table.
Aryna also knows how to heat food in the microwave by herself.
For the girl to be able to wash her hands or brush her teeth independently, a bidet was installed in the bathroom specifically for her needs.
Her mother says that her daughter can also do some light cleaning — for example, wipe a dirty floor or throw out the trash.
The woman emphasizes: if not for the injection, Aryna would not be able to take care of herself now. It should be mentioned that when the girl received Zolgensma, she had already lost a number of skills — she could not move or even sit.
In other words, compared to that state, the progress is obvious.
In kindergarten, Aryna appeared in a wheelchair. By the way, she recently had her graduation there — the girl wore an incredibly beautiful dress. And she herself danced with the other children during the festive concert. The teachers specially created a program so that Aryna in her wheelchair could perform with others — even partnered with a boy.
Aryna Rudnitskaya with her parents and older brother at her kindergarten graduation
The girl is very artistic. Even with some limitations, she gracefully performed dance moves and clearly recited poems.
Aryna deftly moves around the street in a child's electric car that her parents gave her.
The family does not lose hope that one day the girl will be able to walk again. Currently, Aryna is undergoing rehabilitation in an exoskeleton — this is a robotic suit that reduces the load on muscles and joints. With its help, people re-learn to walk after severe injuries.
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Comments
Арина потом захочет выйти замуж и родить кучу таких же прекрасных детей