Family from Mozyr raising $2.9 million to save 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 — this is his great passion. True, his condition can sharply worsen at any moment.

The drug Elevidys can help the boy — at the moment, 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 foundations don't take us — the sum 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 Homel hospital for an examination. There, they performed a series of tests. Overall, all indicators were normal, except for one — creatine kinase (CPK). It was elevated about 50 times, — says Artsiom's mother, Maryna.

Павялічыць

Creatine kinase (CPK, 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 alarmed mother immediately began to suspect what disease her son had. By that time, she had already heard about Duchenne muscular dystrophy.

— A year ago, when we started fundraising 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 did not affect the girl's health in any way, but difficulties may arise with the birth of 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. And it is necessary for the normal functioning of muscles. Without it, muscle fibers gradually break down.

It is considered the most dangerous genetic disease among boys. In girls, it is very rare — approximately 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 is still walking by the time the injection is administered. And that he has no contraindications or any concomitant diseases that would prevent such gene therapy. 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 fundraising for the treatment.

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

— Charity foundations don't take us — the sum is too large. So we are raising funds ourselves. The media and bloggers are helping, and some money comes from the Polish charity platform Siepomaga.

Павялічыць

Loves football and doesn't pay attention to the disease

Artsiom knows about his illness, but he doesn't perceive it as a death sentence. The boy attends a regular school and loves football very much. Despite the fact that he can't fully play his favorite game yet, our hero understands it perfectly.

— He is such a strong boy that he doesn't even seem to pay attention to his illness. Yes, it's hard for him to walk for a long time, and climbing stairs is a disaster. In addition, due to hormonal therapy, which is needed for support, 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 hadn't manifested much yet, but there were problems with peers — classmates didn't understand what was wrong with him, they offended him. But then the children grew up and changed. Now they support him, befriend him, and even help him carry his backpack sometimes.

Everyone in the class treats him very well — he is a communicative, sociable boy, and tries hard to study. He almost never parts with the ball — both at home and outdoors. 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 just so happened that I proposed to Maryna on the very day we learned about Artsiom's diagnosis. The doctors first informed me about the disease because they thought I was his father… Yes, it was hard, but I then told my future wife that we would fight for our son together and until the 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 gets blocked.

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

— Artsiom also loves to draw very much, 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. Our son tries very hard. In general, he is a very sweet, kind boy.

All information on ways to help Artsiom can be found at the link and on Instagram.

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