The story of Maxim
Maxim was born on August 22, 2021. As parents, we were very happy to meet our little boy.
Our son 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.
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 (DMD).
DMD is a deceptive disease that gradually destroys muscles. As a result, individuals with DMD over time lose the ability to walk and require constant care. Eventually, the disease weakens the respiratory muscles, so these children need artificial lung ventilation.
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, our son is undergoing hormone therapy with Deflazacort. It only slows the progression of the disease but does not cure it.
However, today there is hope for Maxim’s recovery – gene therapy with Elevidys. After examining our son at the Medcare clinic in Dubai, the doctors recommended that medication. Elevidys can stop the progression of the disease, but it costs $2.9 million. 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.
Maxim is facing a double battle: a fight for his life and a fight for the right to live in a free and independent country.
In these difficult times, when Ukraine is suffering from the war, raising funds has become even more challenging.
But, as parents, we have no choice and we continue fighting for his future.