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This is the story of our little boy Maxim, who is just beginning his life and has already encountered such a serious disease as Duchenne muscular dystrophy.
Maxim was born on August 22, 2021. We were very happy to meet our little boy. For his father this day became a double celebration - his birthday and the day his son came into the world.
Our boy developed according to his age. Every day he discovered something new. His first steps at 11 months, his first words “mom” and “dad”. We were so happy. We hoped that many exciting things awaited us ahead.
Our world was turned upside down when we heard about Maxim’s diagnosis. At first, we noticed that he had started walking on his toes, and his calf muscles had become enlarged. It seemed like nothing serious. After visiting a doctor and undergoing a series of tests our worst fear was confirmed. Maxim was diagnosed with Duchenne muscular dystrophy.
To establish an accurate diagnosis we underwent a comprehensive examination which included:
a blood test for the muscle dystrophy panel;
a genetic blood test, the result of which showed a deletion of 45-55 exons in the dystrophin gene;
a painful procedure of electromyography, during which special electrodes were used to check the condition of his nerves, and needles - to assess the condition of his muscles.
The results showed primary muscle impairment.
We couldn’t believe that something terrible was happening to our little son. I remember sitting in the doctor’s office, hearing nothing but our own heartbeat. It felt like a horrible nightmare from which we would soon wake up.
Duchenne muscular dystrophy (DMD) is a deceptive disease that gradually destroys muscles. Due to a genetic mutation the body of our son does not produce dystrophin - a protein which is essential for the normal functioning of muscles. This leads to progressive muscle weakness, which over time spreads to all the muscles in the body, including those of the heart and respiratory muscles. As a result, individuals with DMD gradually lose the ability to walk and require constant care. Eventually, the disease weakens the respiratory muscles, so these children need artificial lung ventilation. Unfortunately, it is a harsh battle in which the heart cannot withstand.
To prevent contractures, Maxim has been prescribed the use of orthoses: special night splints for sleep and day splints for use during the day. It is also recommended to visit the swimming pool and attend rehabilitation sessions.
In addition Maxim has been prescribed hormone therapy with the Deflazacort medication. Although it does not cure the disease, it only slows its progression. This medication is not registered in Ukraine, so we need to buy it from abroad.
The emergence of the gene therapy drug ELEVIDYS was a breakthrough in the treatment of DMD, as it is capable of stopping the progression of the disease.
We underwent an examination at the MedCare clinic in Dubai, where doctors recommended this drug for Maxim. However, the cost of the treatment is almost 3 million dollars. For our family this is an excessively large amount of money. Time is running out as the ideal age to receive this treatment is between 4 and 6 years. In order to raise the necessary sum, we have started a charity fundraising campaign.
Unfortunately, the trials for our family have not ended. The doctors explained that Duchenne muscular dystrophy affects only boys, so they suggested we test our older son, Vladyslav, who is now 12 years old.
At the time when we had already started a charity fundraiser for Maxym, Vlad was also undergoing all the necessary tests. And when the results came in, we were shocked – they found the same mutation, the same disease in Vladyslav. Duchenne muscular dystrophy has been present in him since he was two years old, and although the disease progresses more slowly in his case, doctors cannot predict its further development.
Our family has found itself in an extremely difficult situation. We are fighting for both of our sons, and we deeply need the support of each of you. You can view the list of documents confirming Vladyslav's diagnosis at this link. Please, help us save our children. Every donation, repost, or spreading of our story is a chance for the future of our sons. Thank you to everyone who stands by us!
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