The illness-story of 7-year-old Henri and 15-year-old Ralf began with frequent falls and unusual clumsiness, leading to a harsh diagnosis – Duchenne muscular dystrophy (DMD). This rare and progressive muscle disease first takes away the ability to move, then the ability to breathe, with a life expectancy of only a few decades. There is only one medication that can alter the course of the disease for these boys, but for that they urgently need the help of generous donors: 116,000€ is missing.

Exondys-51, the medicine they need, helps the body to produce the protein dystrophin, slowing down the disease’s progression. However, it costs over €1 million every six months for both boys. Thankfully, a large part of this amount is already covered: the Estonian state will fund half through a rare diseases support measure, and 400,000€ will come from the Children’s Foundation’s reserve. But 116,000€ remains – an amount that is beyond the reach of these two families.

Ralf was diagnosed with DMD in 2013. Today, he primarily relies on a wheelchair for mobility but can still stand and walk short distances with support, thanks to years of his family’s dedicated care and therapy. “I remember when Ralf once said to me: Mom, birthday wishes probably don’t come true when you blow out the candles. I once wished I could run like other children, but I still can’t,” recalls Ralf’s mother. While running is no longer possible, this treatment could help him retain the strength he has left. It is urgent to start the treatment because once Ralf is permanently confined to a wheelchair, it will no longer be effective.

Henri, the youngest of the family’s four children, was diagnosed two years ago. Despite his diagnosis, he can still move around independently and enjoys playing with cars, especially his new, shiny blue model. This is thanks to the developmental therapies that the family carefully provides for him. Yet Henri’s condition continues to progress, and soon, the disease will force him into a wheelchair as well.

The medicine costs a lot, but it is the price of keeping these two boys alive – their only hope and chance. Every donation really counts, and there are many ways you can give:

  • Select “Henri ja Ralfi ravim” on the donation form of the homepage of Children’s Foundation. 
  • Make a bank transfer to the Tartu University Hospital Children’s Foundation, noting “Henri and Ralf” or the name of one of the children:

Account Details
SA Tartu Ülikooli Kliinikumi Lastefond
Swedbank IBAN: EE682200221015828742

Bank address: Liivalaia 8, Tallinn
IBAN: EE682200221015828742
SWIFT: HABAEE2X