10-year-old Sebastian has been diagnosed with Duchenne muscular dystrophy (DMD) – an extremely rare and rapidly progressive disease that weakens a child’s muscles, limits every movement, and makes everyday life increasingly difficult.

In December 2025, Sebastian underwent gene therapy at a children’s hospital in Dubai. The treatment, Elevidys, is likely one of the world’s most expensive medicines, with a single dose costing €2.5 million.

Nearly half of the required funding – €1.26 million – was provided through a grant allocated by the Estonian Ministry of Social Affairs to the Tallinn Children’s Hospital Foundation for the treatment of rare diseases. Sebastian’s family contributed €300,000 of their own funds and also covered the costs of travelling to Dubai and staying there during the treatment. The remaining amount was raised through donations made by supporters of the Tallinn Children’s Hospital Foundation.

Sebastian is now under close medical supervision. He attends regular follow-up appointments, undergoes blood tests and other examinations to monitor the effects of the gene therapy, and continues intensive physiotherapy to keep his muscles active and maintain their strength.

Since June 2026, Sebastian has also been receiving ongoing treatment with a new medication that helps reduce the inflammation associated with Duchenne muscular dystrophy and slows the progression of muscle damage, giving him a better chance of preserving his mobility and quality of life.

We kindly ask for your continued support. If you are able, please consider making a donation to help fund Sebastian’s ongoing treatment.

From the bottom of our hearts, thank you to the thousands of people whose kindness and generosity have already helped make Sebastian’s treatment possible. Your support has given him hope for a brighter future.