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Parents of sick children are demanding an urgent decision from WHO: Four boys are at risk, this is their only chance
Croatia🏛️ Politicsyesterday

Parents of sick children are demanding an urgent decision from WHO: Four boys are at risk, this is their only chance

The article discusses the urgent request by parents of children suffering from Duchenne muscular dystrophy (DMD) for the Croatian Health Insurance Fund (HZZO) to expedite the decision on including the drug Givinostat (Duvyzat) on the list of reimbursable medications. The group highlights that four boys are particularly at risk, as time is critical for treatment due to the rapid progression of the disease. They argue that this therapy is their only option and urge HZZO to prioritize it both medically and ethically. The HZZO responded that the drug is not currently on the list and that the process follows regulations, with the application submitted by the authorized holder Italfarmaco S.p.A. through its representative Medis Adria d.o.o. The drug’s price per package exceeds €19,000, and the required dosage varies depending on the child’s weight. The article notes that DMD is a rare genetic disorder causing progressive muscle degeneration and significantly shortening life expectancy.

The emotional exchange between Croatian football players and children suffering from Duchenne muscular dystrophy (DMD) has sparked widespread public attention and solidarity. The story began when national team goalkeeper Dominik Livaković and captain Luka Modrić sent video messages expressing support for four boys battling for approval of the therapy Givinostat from the Health Insurance Fund (HZZO). This gesture resonated deeply with the families of the affected children, who have been advocating for the treatment for months. In response, the boys themselves, along with their parents, organized a heartfelt video message supporting the Croatian national team ahead of its match against Portugal. The video, which was shared widely on social media, highlighted the deep connection formed between the athletes and the young patients, emphasizing mutual encouragement and hope.

The initiative started after reports in the *Jutarnji list* detailed the plight of these children, particularly focusing on Donato, an eight-year-old boy whose case had gained significant public interest. The article explained how the families were waiting anxiously for a decision from HZZO regarding the use of Givinostat, a drug known to slow the progression of DMD. The support from Livaković and Modrić, both prominent figures in Croatian sports, served as a powerful morale boost for the children and their families. Their video message, released shortly after, showed the boys gathered together, expressing their solidarity with the national team and wishing them success in the upcoming game.

The emotional impact of this exchange was further amplified by the broader context of the ongoing struggle for access to life-saving treatments for DMD patients. According to the *N1 Hrvatska*, the association representing families of children with DMD, known as DMD Hrvatska, has been urging HZZO to expedite its decision on including Givinostat on the list of approved medications. They emphasized that time is critical for these children, many of whom face rapid deterioration in muscle function. The organization pointed out that over 60 children in Croatia are currently living with DMD, and without timely intervention, their quality of life—and even survival—can be severely compromised.

The process of approving new drugs in Croatia involves several steps, including evaluation by the Health Insurance Fund and adherence to regulations set by the European Medicines Agency (EMA). While EMA granted approval for Givinostat in June 2025, the drug remains unavailable in Croatia due to the lengthy bureaucratic procedures required for its inclusion on the national list of medications. The association noted that the cost of one package of the medication can exceed 19,000 euros, making it financially inaccessible for most families unless approved by HZZO. Despite these challenges, the families remain hopeful, believing that public pressure and the recent show of support from the football community could influence the outcome.

The emotional resonance of the video messages from the children and their families has also brought renewed focus to the issue of rare diseases and the importance of timely medical interventions. The collaboration between the football world and the DMD community highlights the potential for cross-sector solidarity in addressing complex health challenges. As the match against Portugal approaches, the message from the children serves as a reminder of the human stories behind the statistics and the urgent need for policy changes that prioritize patient welfare.

Looking forward, the families continue to advocate for a swift decision from HZZO, while the football community remains committed to offering its support. The situation underscores the power of collective action and empathy in driving change, especially in cases where the stakes are high and the outcomes can be life-altering. As the nation watches the match, it also reflects on the broader implications of this moment—a testament to the enduring connections that can form between seemingly unrelated groups when they come together for a common cause.

3 reports

Večernji list logoVečernji listIndependentCenteryesterday
VIDEO Bolesni dječaci uzvratili vatrenima na podršci, pogledajte ove emotivne poruke

In a heartwarming gesture, children suffering from Duchenne muscular dystrophy (DMD) responded to the support shown by Croatia's national football team, known as 'Vatreni,' during their match against Portugal. The team's goalkeeper, Dominik Livaković, had previously sent a video message expressing solidarity with the children who are fighting for approval of the therapy 'givinostat' from the Croatian Health Insurance Fund (HZZO). This support has provided additional strength to the families of these children, whose battle has been ongoing for months. Duchenne muscular dystrophy is a rare inherited disease causing progressive muscle degeneration, often affecting young boys early in childhood.

Bias read (Center): The article presents a balanced account of the situation, highlighting both the gesture of support from the football team and the challenges faced by the children and their families. There is no evident bias in the language or framing of the story, which focuses on the emotional response and the医疗挑战

Jutarnji list logoJutarnji listIndependentCenteryesterday
Vatrenima tik pred utakmicu stigla emotivna poruka DMD dječaka

A group of children suffering from Duchenne muscular dystrophy (DMD) created a video message expressing their support for Croatia's national football team ahead of their match against Portugal. This came after Croatian players Dominik Livaković and Luka Modrić had previously sent video messages showing solidarity with the children. The children's message was shared by an association of parents of DMD patients and included a heartfelt statement expressing unity with the players and wishing them luck in the game. The initiative followed earlier media coverage by Jutarnji list highlighting the children's situation and their wait for approval of a treatment called givinostat from the Croatian Health Insurance Fund (HZZO).

Bias read (Center): The article reports on a heartwarming exchange between Croatian footballers and children with a rare disease, focusing on mutual support rather than political positions or controversies. There is no evident framing that favors one side over another, and the content remains neutral in tone.

N1 Hrvatska logoN1 HrvatskaIndependentLeftyesterday
Parents of sick children are demanding an urgent decision from WHO: Four boys are at risk, this is their only chance

The article discusses the urgent request by parents of children suffering from Duchenne muscular dystrophy (DMD) for the Croatian Health Insurance Fund (HZZO) to expedite the decision on including the drug Givinostat (Duvyzat) on the list of reimbursable medications. The group highlights that four boys are particularly at risk, as time is critical for treatment due to the rapid progression of the disease. They argue that this therapy is their only option and urge HZZO to prioritize it both medically and ethically. The HZZO responded that the drug is not currently on the list and that the process follows regulations, with the application submitted by the authorized holder Italfarmaco S.p.A. through its representative Medis Adria d.o.o. The drug’s price per package exceeds €19,000, and the required dosage varies depending on the child’s weight. The article notes that DMD is a rare genetic disorder causing progressive muscle degeneration and significantly shortening life expectancy.

Bias read (Left): The article frames the situation as an urgent medical and ethical issue, emphasizing the dire need for immediate action and portraying the families’ plea as morally justified. The tone leans toward highlighting the urgency and necessity of the treatment, which aligns with a left-leaning perspective.

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