You can kick well in a wheelchair

A girl peers round the corner with big, shining eyes. "Hello, here I am!" shouts Bercem and waves. The eleven-year-old is a whirlwind. She talks like a waterfall, sings with passion and has recently taken up playing football. She knows that this works well in a wheelchair if you fold up the footrests. Especially with her new electric wheelchair, which she is proud of because it can flash, honk and is really fast. "I can feel the wind in my hair," says Bercem cheerfully as she does a few laps around the large rooms at Bethel Children's and Youth Hospice. For the eleven-year-old, her stay at Bethel is like a holiday. "I've been here a lot and I think it's great," she says.

But Bercem has not always been so full of energy. "She often had to go to hospital, mostly because of life-threatening pneumonia," reports her mother Berivan Is. The woman from Bielefeld is constantly worried about her child, who suffers from congenital muscular dystrophy type Ullrich. This is an extremely rare disease that affects less than nine in a million people. It leads to pronounced muscle weakness. Lung function is particularly affected. Bercem therefore has to wear a mask at night to support her breathing. In order to be able to intervene immediately in the event of a crisis, someone is with the 11-year-old day and night. For Bercem's mother, staying at the Bethel children's and young people's hospice is like a little holiday. "Here I can finally let go and give up responsibility completely," says the 31-year-old single mum.

For most parents, the most important thing is actually to finally sleep through the night in the hospice. Because their children are well looked after. By people who are highly qualified to do so. On the lower floor there are rooms for children and young people who have a life-shortening illness. And playrooms. Therapy programmes. A cosy room with a fireplace and a large open kitchen. On the upper floor, parents and siblings stay like in a beautiful hotel. Everything revolves around relieving the burden on families. Because they need to recharge their batteries for their strenuous everyday lives. "I was quite scared of the children's hospice at first," recalls Bercem's mother. "I thought it was like a clinic and it was all about dying. But it's about living. There's a lot of laughter here. And it's nice to get to know the other parents."

Playing. Making fun. Racing against each other. Bercem likes it all. She thinks positively, even though she knows full well that her illness is progressing. Her muscles continue to deteriorate. At some point, she might not even have the strength to operate the wheelchair's electric controls with her fingers. "Oh, the technology is already advanced. Then I'll just use my eye movements," she says. And she has dreams: "I would love to become a rock star. Because I can sing really well." Here we go: karaoke at the children's hospice ...

Text: Heike Lepkojis | Photo: Christian Weische