Muscle disease

Millions for gene therapy would help Bruno (7)

Bruno was diagnosed with Duchenne muscular dystrophy in January. His mother and sister also carry the gene in their bodies, but the disease itself only breaks out in males.(Bild: Doris Seebacher)

In January, little Bruno from Wiener Neustadt was diagnosed with Duchenne muscular dystrophy. This hereditary disease destroys muscle cells and may soon leave him in a wheelchair. Only an expensive gene therapy in the USA could help to stop the disease. 

The symptoms began in January of this year. "Bruno suddenly had severe pain in his leg and could no longer walk," says mother Agota Heiner, describing the start of the insidious disease. Two days later came the devastating diagnosis - Bruno was suffering from Duchenne muscular dystrophy. This hereditary disease is accompanied by the gradual destruction of muscle cells and soon attacks the heart and respiratory muscles.

 

Bruno can still move almost without restriction, but too much movement can still harm him.(Bild: Doris_SEEBACHER)

Bruno loves school and also enjoys traveling. "I've already been to Italy, Spain and Monaco," he says proudly.(Bild: Doris_SEEBACHER)

Little Bruno's parents are doing everything they can to raise money for the expensive operation.(Bild: Doris_SEEBACHER)

At the moment, the seven-year-old is still a bright, sporty boy. He enjoys going to school, playing with his twin sister Lilly and is interested in cars and flags. Bruno himself knows that he is ill. He can still move around without restriction, but has to be careful not to overexert himself. He swims three times a week, undergoes physiotherapy once a week and stretches his muscles every day. He has the pain under control thanks to medication. These alone cost 7,000 euros a month, but are covered by health insurance.

Bruno could soon be in a wheelchair

But the disease is insidious. "It comes from the legs and gradually moves upwards," says his mother. And soon Bruno could be confined to a wheelchair. The family is now trying with all their might to prevent this. However, this is only possible with gene therapy, which is available in the USA - and costs four million euros. A lot of money for the small family, which is why they are dependent on donations and quick action. "The disease cannot be reversed, but it can be stopped," says Agota Heiner. There is still time now.

On November 19, a charity event for Bruno will take place in the ballroom of Wiener Neustädter Sparkasse.(Bild: Doris_SEEBACHER)

Donation account: IBAN: AT 60 2026 7021 0127 1183, BIC: WINSATWNXXX. More information at www. heinerbruno.com