DMD Warrior Mark Penzes and his family live in Hungary. After learning that Mark has DMD (Duchenne muscular dystrophy), they are struggling to overcome the shock they experienced and to prepare a bright future for him. Let’s take a look at the story of this innocent DMD Warrior and support him. [Read More: What does DMD Warrior mean?]
The Story of Mark Penzes, DMD Warrior from Hungary
His parents observed that Mark was not moving like his older brother when he was just six months old, according to his mother.
His mother felt that Mark was behind his peers, but everyone said that he was a normal child and that they were worrying for nothing.
One of the first signs of DMD is calves that look muscular but aren’t.
Our doctor advised us to have a blood test. The blood test showed a creatine kinase level of 100 times higher than normal.
The doctor, whose suspicions grew, referred Mark to a more specialized doctor. But at that time, there was a Covid-19 pandemic and face-to-face meetings were almost impossible.
They had a genetic test during the Covid-19 pandemic. For this reason, it took a long time to get the test result. However, during this time, Mark’s family did detailed research and were worried when they came across Duchenne muscular dystrophy. Because the most undesirable disease they came across as a result of their research was DMD. [Read More: What is DMD?]
How we found out our son had DMD
They found out that the test result came out when they received a phone call from the hospital. The person on the phone asked them to come to the hospital. In these types of test results, the situation was explained to the patient’s family face to face. Despite the Covid pandemic, they took the family into a room. When they went in, there was another person wearing a mask next to the doctor. His badge said Psychologist. Mark’s family were in complete shock. Diagnosis: Duchenne muscular dystrophy.
We all sobbed together for hours
Mark’s mother describes the shock and the emotional upheaval they experienced as, ‘The next half hour was almost a blur for me. The next thing I remember is sitting in another office with the psychologist, asking if he should call us a taxi or if I could go home. We didn’t ask for a taxi. We arrived home, our family and our two sons were waiting for us, and we all sobbed for hours.’
DMD gene therapy is too expensive
Mark’s mother, Judit Penzes, said in a post on social media that various treatments had helped slow her son’s disease, but that the symptoms of the disease were now clearly visible.
There is a treatment for the disease, but the cost exceeds 2.9 million US dollars and is applied in America and Dubai. The family is asking for help from the community so that their child can go to therapy on time. [Read More: Will Elevidys Receive Approval from the European Medicines Agency (EMA)?]
Gene therapy is the only solution for the little boy, but time is running out; even if money is raised, the treatment cannot restore the condition of the muscles that are already damaged.
Mark is on steroids, which slows down the disease a little. However, this treatment option increases his appetite a lot and, unfortunately, causes him to gain weight very easily.
2.9 Million USD Needed to be Raised
The DMD gene therapy that Mark needs to take for his treatment will cost 2.9 million USD and the family would like to thank everyone for any help. A charity concert will be held for Mark on February 1, 2025. Tickets for the charity concert in Kerepes on February 1 can be purchased at the Szabó Magda Cultural Centre and Library, but there are also other ways to support the little boy:
IBAN: HU98 11742513-21458903-00000000
Paypal: [email protected]