18-year-old with severe muscle disease awaits life-saving treatment after decade-long wait

Maru, who recently turned 18, is on the verge of receiving life-saving treatment for Duchenne muscular dystrophy, a severe muscle disease he has battled since the age of two. He requires a medication costing 54,000 euros to live and breathe independently.

Dr. Eve Õiglane-Šlik, Maru's physician, emphasized that this is a critical moment to help the young man. The medication is only effective on muscles that still retain their function. Maru has been using a wheelchair for years due to the relentless disease and will soon require a ventilator without treatment.

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now is absolutely the last moment to help the young man, because the medicine can only work on those muscles that have retained their functionality.

The path to accessing this treatment has been long and difficult. The same medication has been provided to a 14-year-old boy with the support of the Children's Foundation. However, a previous rule restricted the drug's sale to patients who could walk independently, a category Maru no longer fits. While a generic version is now available and the walking test requirement has been removed, Maru's family faces the challenge of funding.

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the medicine was available in 2015, when the boy was still walking nicely.

Adding to the pain is the fact that the medication existed in 2015 when Maru could still walk. His family's request for funding was denied by the Health Insurance Fund then, and it remains unfunded. The Children's Foundation's budget was also insufficient at the time, leaving Maru without the treatment.

Despite the challenges, Maru and his family have fought for every muscle, attending daily therapies and using a home exercise machine funded by donors. This has helped Maru bravely face his condition. The most significant gift for him would be the medication that can preserve his independent breathing ability. Donations can be made through the Children's Foundation's donation forms, charity phone numbers, or bank transfers.

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the biggest gift for him would be the medicine that would save his independent breathing ability.