• 10-year-old Sebastian has been diagnosed with the extremely rare Duchenne muscular dystrophy. His health is deteriorating day by day, and treatment must begin as soon as possible. Since this therapy is only suitable for children who can still walk independently, time is running out rapidly for Sebastian.
• Thanks to funds allocated by the Estonian Ministry of Social Affairs to the Tallinn Children’s Hospital Foundation for the treatment of rare diseases, approximately half of the required amount — €1.26 million — is already available. According to the law, these funds must be used in 2025.
• The cost of this innovative and promising gene therapy is €2.5 million. The Estonian Health Insurance Fund does not cover it. About €1.24 million is still needed.
• We sincerely appeal to people in Estonia and abroad to help support Sebastian’s treatment and give him a chance to live.

Sebastian has been diagnosed with an extremely rare and fast-progressing disease – Duchenne muscular dystrophy – which weakens his muscles, restricts every movement, and makes everyday life increasingly difficult. Over the past nine months, his physical condition has deteriorated significantly – he stumbles more often and must be constantly monitored so he does not fall. At school, Sebastian has a support person to help him with daily activities. His parents support him every step of the way and are ready to give up everything for their child’s life and health.

Sebastian and his family dream of simple things – a normal life, so that the boy can go to school, play outside, walk on the grass, or kick a ball with his little brother. Sebastian’s greatest dream is to become a dog trainer.

What is Duchenne muscular dystrophy?

Muscular dystrophy is a genetic disorder usually caused by a mutation in the gene responsible for producing dystrophin – a protein essential for healthy muscle function. The disease primarily affects boys. Without treatment, the prognosis is devastating: life expectancy is often limited to the early twenties, with respiratory failure and infections being the leading causes of death. However, thanks to recent medical advances, the first rays of hope have appeared. Around the world, cases have been reported where innovative gene therapy has slowed or even halted the progression of the disease.

How did Sebastian’s illness begin?

At 15 months, Sebastian had still not started walking. His doctor advised that if he wasn’t walking by 18 months, further examinations would be needed. At 16 months, Sebastian finally began to walk. Another warning sign appeared at the age of 2.5 years in kindergarten, when a teacher noticed he was trying hard to climb a hill but couldn’t manage it. Compared to his peers, he moved more slowly, tired more quickly, and daily activities became more difficult.

In the autumn of 2020, routine blood tests revealed that Sebastian had extremely high liver enzyme levels, and he was referred to Tallinn Children’s Hospital for further investigation. After several days of thorough examinations, the doctors suspected Duchenne muscular dystrophy — a diagnosis that was heartbreakingly confirmed by genetic testing. His family was devastated, but they decided to fight for their son at any cost.

Sebastian’s father has spent the last years searching tirelessly for treatment options, contacting hospitals and pharmaceutical companies worldwide, consulting Estonian doctors, and networking with parents of children with the same diagnosis.

One of the most expensive medicines in the world

Since 2023, the FDA in the United States has approved Elevidys, a gene therapy that has shown promising results in children with the same diagnosis. The one-time intravenous infusion costs €2.5 million, making it one of the most expensive medicines in the world.

In January 2025, genetic testing in Dubai confirmed that Sebastian’s mutation is eligible for treatment with Elevidys. His family paid €3,000 for this test themselves.

Gene therapy with Elevidys delivers a shortened but functional version of the dystrophin gene into the body, enabling muscles to produce the protein they need to function. Although results vary, there is hope that Sebastian’s disease progression will slow or stop, extending his mobility and potentially prolonging his life.

Dr. Inga Talvik, head of neurology and rehabilitation at Tallinn Children’s Hospital, explains:
“Elevidys is such a new therapy that we do not yet know its long-term effects, but initial studies show positive results. The goal is not to make the child healthy overnight, but to stop the progression of the disease. Duchenne muscular dystrophy affects all muscles, including the heart muscle, leading eventually to heart failure. Sebastian’s condition is worsening day by day. The earlier treatment is given, the better the chance of success.”

Tallinn Children’s Hospital Foundation calls for help

The Tallinn Children’s Hospital Foundation has decided to support Sebastian’s family by co-funding gene therapy. Half of the required amount (€1.26 million) can be covered by the Ministry of Social Affairs. To raise the remaining €1.24 million, we need the help of kind people in Estonia and abroad.

Donations are urgently needed to give Sebastian the chance of a full and valuable life. Every donation – large or small – brings him closer to walking, playing with his brother, and fulfilling his dreams. Every child deserves life.

Please follow the link for International Bank Details

Donation details:

Recipient: Tallinn Children’s Hospital Foundation (Tallinna Lastehaigla Toetusfond)
Payment reference: Sebastian

Swedbank: EE142200221001137609
SEB: EE481010220026847017
Luminor: EE921700017000265265
LHV: EE677700771001364621
Coop Pank: EE614204278617991000

Donations can also be made directly via the Foundation’s website: Donate online – Tallinna Lastehaigla Toetusfond

(please include keyword “Sebastian”).

From abroad, donations are also possible via Apple Pay, Google Pay, and PayPal.

Donation phone numbers:

Call 900 7705 to donate €5
Call 900 7710 to donate €10
Call 900 7715 to donate €25