A family from Mazyr is raising $2.9 million to save their son

With such a diagnosis, muscle weakness manifests early, and by the age of 12, many children stop walking altogether. However, the 11-year-old boy has not only retained the ability to walk but also plays football – it's his great passion. True, his condition can sharply worsen at any moment.

The drug Elevidys can help the boy – currently, it is the most expensive medicine in the world. Its cost is $2,900,000. Currently, about 37% of the required amount has been collected.

"Charity funds don't take us – the amount is too large"

— I remember the doctor noticed that Artsiom had some weak muscle tone in his arms and legs and advised us to go to the Homiel hospital for an examination. There, they conducted a series of tests. Overall, all indicators were normal, except for one – creatine kinase (CK). It was elevated about 50 times, — says Artsiom's mother, Maryna.

Павялічыць

Creatine kinase (CK, or creatine phosphokinase) is an enzyme that helps provide energy to cells with high energy consumption: skeletal muscles, heart, and brain.

The geneticist then told Maryna that a diagnosis is not made based on one test result, so it was too early to be upset. However, the anxious mother immediately began to suspect what disease her son had. By then, she had already heard about Duchenne muscular dystrophy.

— A year ago, when we opened the fundraiser for Elevidys, four children with this diagnosis were known in Belarus. Now, I think there are more…

Павялічыць

After Maryna learned about her son's diagnosis, she found out that she herself is a carrier of the disease. But her mother is not. This has not affected the girl's health in any way, but difficulties may arise when having other children, especially boys.

Duchenne muscular dystrophy is a severe hereditary disease in which, due to a genetic malfunction, the body does not produce the protein dystrophin. This protein is necessary for normal muscle function. Without it, muscle fibers gradually break down.

It is considered the most dangerous genetic disease among boys. In girls, it is very rare – about one case per 50 million. In boys, the prevalence is one case per 3.5-5 thousand children.

— Now the main thing is that the child can still walk by the time the injection is administered. And that he has no contraindications or any concomitant diseases that would prevent such gene therapy from being prescribed. Last year, doctors told us that Elevidys is suitable for Artsiom. As soon as we heard this, we confirmed everything with documents and immediately opened a fundraiser for the treatment.

Approximately $1,066,350 has been raised for Artsiom's treatment out of $2,900,000.

— Charity funds don't take us – the amount is too large. So we are raising funds ourselves. Media outlets and bloggers are helping, and some money comes from the Polish charity platform Siepomaga.

Павялічыць

Loves football and doesn't pay attention to the illness

Artsiom knows about his illness but does not perceive it as a sentence. The boy attends a regular school and loves football very much. Despite not being able to fully play his favorite game yet, our hero is excellent at understanding it.

— He is such a strong boy that he seems not to even pay attention to his illness. Yes, it's hard for him to walk for a long time, and climbing stairs is a complete disaster. In addition, due to supportive hormonal therapy, he has gained excessive weight… But our son doesn't despair.

Павялічыць

— And how do children at school treat him?

— In the first grade, Artsiom's illness was not yet very pronounced, but there were problems with peers – classmates didn't understand what was wrong with him, they hurt him. But then the children grew up and changed. Now they support him, befriend him, and even help him carry his backpack sometimes.

In class, everyone treats him very well – he is a communicative, sociable boy, and tries to learn. He hardly ever parts with his ball – both at home and outside. He tries to play football as much as he can.

Павялічыць

"I proposed to Maryna on the same day we learned about Artsiom's diagnosis"

In this whole story, there is another important person – Maryna's husband, Ivan. He is not Artsiom's biological father, but the boy considers him his dad. The man, in turn, loves him like a son and does everything to help the child.

Павялічыць

— It so happened that I proposed to Maryna on the very day we learned about Artsiom's diagnosis. The doctors were the first to inform me about the illness, because they thought I was his father… Yes, it was difficult, but I then told my future wife that we would fight for our son together and until the very end. Artsiom started calling me Dad from the first days; we have a very warm, trusting relationship, — says Ivan.

Павялічыць

The man maintains a backup account on social media dedicated to fundraising for Artsiom's treatment – just in case the main one is suddenly blocked.

Artsiom and Ivan spend a lot of time together – they both love football, watch matches, and travel to support various teams.

— Artsiom also loves to draw, but even in his drawings, football themes always shine through, — the man smiles. — Every day for 10-15 minutes, we play with the ball, as much as he can manage. Our son tries very hard. Overall, he is a very sweet, kind boy.

All information on ways to help Artsiom is available via the link and on Instagram.

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