Thirteen-year-old Kevin, sixteen-year-old Ralf, and eight-year-old Henri can fight Duchenne muscular dystrophy only with the help of an expensive medicine, and only as long as donations continue. The disease, which without treatment takes away the ability to move and to breathe, was also taking away the boys’ will to live. Now, however, they dare to dream about the future again because the treatment is working very well.

The total treatment cost for half a year is 1.35 million euros, and although funding comes from the state through the rare disease treatment program, local municipalities, the families themselves, and the Children’s Foundation’s reserve fund, 328,000 euros are still missing. It is indeed a very large sum, but how can we measure the lives of three wonderful boys in money?

Kevin, who lives in a children’s home, has been receiving the expensive medicine for 2.5 years; Ralf and Henri have just completed their first year of treatment. Although all three have Duchenne muscular dystrophy, the genetic mutations differ, and the medications are also different, but in all cases, they have done far more than simply slow the disease’s progression: the boys’ heart and respiratory muscles are in good condition, they have gained significant strength, and they now look to the future with hope.

“Just a year ago, the disease had reached a point where we feared every day that it might be the last time Ralf could still stand on his own; the risk of falling – and the fear – was immense. Ralf’s sadness also grew: I saw how he lost confidence and vitality day by day. He was no longer the cheerful, sunny, smiling boy he once was. The harsh reality of the disease was catching up with us,” Ralf’s mother Katri describes. The treatment, however, has given Ralf tremendous energy and strength: he works hard every day to stand a little longer, walk a little farther, and he’s motivated at school. Ralf is fascinated by IT – something he wants to study at university – and he’s increasingly interested in vintage cars, so much so that he wants to restore at least one classic car with his own hands.

Thirteen-year-old Kevin saw his uncle fade away from the same disease. Before treatment, Kevin too had given up and saw no reason to get out of bed. Today, however, he can walk longer distances and says he must train hard and stay strong so that one day he’ll be able to lift his own children into his arms. Living in a children’s home, he dreams of a family and a real home of his own – something he’s never had.

The youngest of the three, eight-year-old Henri, started school this autumn. The treatment has given him something the cruel disease would otherwise have taken away: a normal childhood. He can ride his bike with friends, walk long distances, and enjoys climbing stairs to high floors. But for Henri to keep his strength and continue conquering those stairs, the costly treatment must continue.

Kevin, Ralf, and Henri dream of the future, but only with the help of kind donors can their journey go on. The amount needed is large, which means every contribution matters even more.

You can help in several ways: by selecting “Henrile, Ralfile ja Kevinile ravim” or “Support children with rare diseases” from the donation form located at lastefond.ee/anneta. You can also make a bank transfer indicating “Henri, Ralf and Kevin” or one of their names:

Bank: Swedbank

Address: Liivalaia 8, Tallinn

IBAN: EE682200221015828742

SWIFT: HABAEE2X