The family is looking for sponsors for treatment available only abroad
Dusán was 11 months old when, after several weeks of maddening uncertainty, the family received the shocking diagnosis: Duchenne muscular dystrophy. DMD is an inherited disease characterized by progressive muscle weakness and progressive damage to muscle cells. The disease is caused by a modification of the dystrophin protein, which is essential for the stability of muscle cells. According to estimates, around 6 out of 100,000 people in Europe and North America may be affected. The disease cannot currently be cured, it develops in boys, girls are asymptomatic carriers.
Dusán was born on September 7, 2020, World Duchenne Muscular Dystrophy Day, the pronunciation of his first name is almost the same as the name of the disease.
Encouraging results have already been achieved during the research into the possible treatment of the currently incurable disease, primarily in the United States, well-documented experimental therapies have existed since 2021. The family visited more than 20 clinics and pharmaceutical companies around the world, and they didn’t even get a response from many places. Finally, after 31 months, there was a glimmer of hope, an opportunity, from a European research center. The family is currently preparing to give up their life and home and join an experimental life-long treatment in Belgium.
“Undertaking an experimental treatment is risky, as we are starting a therapy whose long-term effects are not yet fully known. However, we do this not only for Dusá, but for the sake of the entire DMD community, to contribute to the development of the treatment of the disease,” emphasized Zalán, the father.
The family is currently looking for financial support to cover the costs of the following years, as the parents are expected to have to give up their previous jobs and livelihood due to the move abroad. Each business a with the resources devoted to the support of Dusán it can also help the fulfillment of its sustainability goals, since the subsidies can also be included in their ESG report.
“We have accepted the terms of the contract, Dusán has been participating in preliminary research and investigations for a year and a half. This treatment could lead to a very expensive gene therapy that only a few have access to. We now need 120,000 euros to create everything at the start so that we can later provide the conditions for treatment and stay outside on our own,” said Dusán’s father, Zalán.
The experimental therapy, which will last several years, may begin around Christmas. “The biggest advantage of the treatment is that, if it is successful, it can not only improve Dusán’s quality of life, but we can gain time to develop second-generation drugs, which can give hope to children and their families struggling with the disease,” added Zalán.
Name of the foundation: Foundation for the World of Dusán
Your account number: 10300002-13839299-00014902
Source: www.patikamagazin.hu
