Sheltered between colourful bubbles

Ella loves tinsel. Her mum usually has a glittering garland with her. When she waves it around, Ella reacts with a smile. On good days, the girl gurgles with joy and laughs out loud. Even when Ella is pushed along shallow forest paths in the buggy, she is completely relaxed. The sun peeps through the leaves and little speckles of light dance on her face. That's why the Snoezelen room in the Bethel children's and youth hospice, which is funded by donations, is perfect for the twelve-year-old.

Changing light sources bathe the white room in bright colours. Dots of light flit across the ceiling. Ella lies on a soft platform, her head resting on a pillow. Bubbling bubbles rise up next to her in columns of water. Sometimes yellow or blue, sometimes red or green. Ella cannot speak. But her facial expressions show: "I'm fine here." Ella can't walk or stand up. But she stretches out her arms until her hands touch the glass. The bubbles bubble upwards weightlessly. Weightless? That's not the life of Ella, her big sister Hannah and her mum.

The reason for this has a cold name: SCN 8A! It means that a small section of Ella's genome has spontaneously changed. 8 A. The mutation causes her to have severe epileptic seizures and information cannot be transmitted between nerve cells in a controlled manner. There is no therapy. "Ella is at the level of a toddler," says her mother Iris Engelmann, who is staying at the Bethel Children's and Youth Hospice with her daughters for ten days.

The 52-year-old talks very calmly about her life with a seriously ill child. Everyday life can only be managed with a lot of structure. Iris Engelmann used to work in project planning, but since the birth of her second child, she has had to make different plans. Every day anew - for her little Ella. Because the little girl is never allowed to be alone and needs help with everything. The epileptic seizures are the worst. "Ella has seizures every night. Since she was three weeks old. And I always hope that she will start breathing again," says Iris Engelmann, exhausted and yet wide awake.

That is exactly the concept. Children with life-limiting illnesses are looked after, nursed and medically cared for. This gives their parents time to recharge their batteries, and siblings are given their own programme in which they are the centre of attention for once. For families, a children's hospice means relinquishing responsibility and loosening the tight corset of everyday life. But death sometimes peeks through the door too. "Over the years, you realise that children pass away. In the hospice or from the SCN 8A WhatsApp group," says Iris Engelmann. The thought is quickly pushed aside again. "We have to live in the moment!" she says. A moment of weightlessness is within reach: a trip to the thermal baths. Just let yourself drift in the warm water and take a deep breath. Because Ella is in good hands at Bethel.

Text: Heike Lepkojis | Photo: Thomas Richter