Together for the recovery of Márk Pénzes Foundation

The aim of the foundation is to support the treatment of Dániel Márk Pénzes, who suffers from Duchenne muscular dystrophy.
why was the foundation created?

Because everyone deserves a chance at a full life

The foundation was set up by us, Mark’s parents, to provide support for our son Mark, who has Duchenne muscular dystrophy – DMD. This rare and serious genetic disease causes a continuous weakening of the muscles, which results in severe physical limitations and increasing medical challenges. 

At the moment, the only treatment available to offer hope for Mark is in the United States and Dubai. However, treatment is extremely expensive. The Foundation’s aim is to raise financial support to enable Mark to receive this life-saving treatment, which could give him a longer and fuller life.

Every donation helps Mark get closer to the treatment he needs and gives him hope in his battle with Duchenne muscular dystrophy.

Beginning
Marko’s movement development was lagging behind his peers, but everyone said he would catch up, and that we shouldn’t worry. When our GP gave him a 100% health score, despite our concerns, at the age of one, we made a private appointment to see a neurologist. He examined Marko and immediately indicated that there was a problem. He put together a diagnostic plan and even then we could see the compassion in his eyes. Today I am certain he already guessed what the problem was. There are some very visible symptoms of DMD, such as extremely large calves. To this day, many people on the street or at the playground comment: what a muscular calf Marko has! The blood test with our one-year-old was going to be a nightmare. I remember sitting sadly after the test in the McDonald’s at Duna Plaza. Marko was picking his fries. He took the blood test, which has since become routine, very well. When the results came back, his creatine kinase level was more than 100 times higher than normal. There were some other significantly bad values, but this was the most extreme. The doctor immediately cancelled the diagnostic plan and sent us to another specialist, wishing us strength.
Fighting
At the height of the Covid lockdowns we were referred to a specialist, who we were supposed to go see, but he was not taking any in person meetings due to the pandemic. We were referred to another young doctor. They took a blood sample again for genetic testing, however, this specific test needed the same machine to evaluate the sample that they used for the Covid tests, so the results came back with quite a bit of delay. The wait was long, and we were asked not to start googling for our own diagnosis. I couldn’t sit idle, I started searching. I found several disturbing things, but the scariest of all was DMD. Pictures of children in wheelchairs, elsewhere bigger boys, chained to a bed, on ventilators.
God, this can’t happen to us, please don’t do this! The test was done, I was called to the hospital by phone. Protocol states that whatever the result, it can only be told in person. Despite Covid, they let us both in, which was suspicious. As we entered, there was another man waiting for us next to the doctor. I couldn’t see their faces, they were wearing masks, but I could read from his badge that he was a psychologist. I was in complete shock. Diagnosis: Duchenne muscular dystrophy. For me, the next half hour was practically a blur. The first thing I remember after that was sitting in another office with the psychologist asking if he should call us a taxi or if I could drive home. We didn’t ask for a taxi. We arrived home, where our family and our two sons were waiting for us, and we all sobbed together for hours.
Development
Our aim is to do everything we can to improve Mark’s quality of life and slow down the decline. Mark regularly attends conductive therapy three times a week in an institutional setting and two times a week in a home setting. Conductive therapy is particularly important for people with Duchenne muscular dystrophy, as it helps to preserve mobility, improve coordination and reduce the backwardness that results from delayed motor development. In addition, Mark also works weekly with a special needs teacher to develop his cognitive skills. Mark also attends weekly riding therapy. Equestrian therapy helps to improve his physical functions such as muscle tone, balance and coordination. Márk has a passion for animals and spending time with horses is also a great stress relief for him.
LIfe pictures
We want to continue to give Mark a full life in the future. What more could a parent want?