Hope for a little boy battling the incurable disorder DMD: Dusán’s family seeks support for experimental treatment

At just 11 months old, Dusán’s family received the devastating news: their young son had been diagnosed with Duchenne muscular dystrophy (DMD), a rare and incurable genetic disorder that leads to progressive muscle weakness and damage. After weeks of uncertainty, the diagnosis came as a shock. DMD, which primarily affects boys, is caused by a mutation in the dystrophin gene, responsible for the stability of muscle cells. The disease gradually weakens the muscles, and while there is currently no cure, research is underway for potential treatments.

Dusán’s birth on 7 September 2020, coincided with World Duchenne Day, and his name almost mirrors the pronunciation of the disease, symbolising a connection to his ongoing battle, ICT Global writes.

A ray of hope: Seeking experimental treatment for DMD

Over the past three years, Dusán’s family has explored every possible option to give him the best chance at life. Despite visiting over 20 clinics and pharmaceutical companies worldwide, many of which offered no answers, hope emerged from an unexpected place: an experimental therapy in Europe. The family now faces the difficult decision to uproot their lives and move to Belgium, where Dusán can participate in a pioneering treatment, which is still in its early stages.

The experimental treatment, though promising, is not risk-free.

“It is risky to undertake an experimental treatment as we are about to begin a therapy whose long-term effects are still not fully known. However, we are doing this not only for Dusán but also for the entire DMD community, to help advance the understanding and treatment of this disease,”

said Zalán, Dusán’s father.

Financial struggle: Help needed for treatment costs

The experimental treatment is expensive, and the family is seeking financial support to cover the costs of moving abroad and sustaining their lives there. With the necessity of leaving their jobs and daily life behind, the family faces significant financial burdens. As part of their support, businesses are encouraged to contribute resources, which can also be reflected in their ESG (Environmental, Social, and Governance) reports.

“We have accepted the terms of the contract, and Dusán has already been participating in preliminary research and trials for over a year. The treatment is a costly alternative to gene therapy, which very few people have access to. We need EUR 120,000 to cover the costs at the start, ensuring we can provide everything Dusán needs to continue his treatment and stay abroad,”

said Zalán.

A life-changing opportunity

Photo: Dusán Világáért Foundation

Dusán’s participation in the experimental therapy could begin around Christmas, with the potential to significantly improve his quality of life. “If successful, this treatment could not only improve Dusán’s condition but also buy us time to develop second-generation drugs. This would offer hope for many children and families affected by this disease,” Zalán added.

Dusán Világáért Foundation: Supporting the mission

To further support Dusán’s fight, the Dusán Világáért Foundation has been established. Its mission is to provide Dusán with the best chance at healing and living a full life by financing the treatments and tools that will enhance his quality of life.

Support the Cause:

Individuals and businesses can contribute to Dusán’s treatment fund, which is critical to covering the next few years of international medical care. The foundation’s target amount is HUF 50 million (EUR 120,000), which will help cover the costs of Dusán’s overseas treatments.

If you would like to help, donations can be made to:

Dusán Világáért Foundation Account Number:
10300002-13839299-00014902 (IBAN: HU97 1030 0002 1383 9299 00014902)

Dusán Világáért Alapítvány 2234 Maglód, Árpád vezér utca 61 /3

Every contribution, no matter how small, makes a significant difference.