Marie Richter is 13 years old and is classed as „severely multiply disabled“. In this story, we tell you what that means, what her triplet siblings have to say and why she feels at home at the children’s hospice.
By Lisa Harmann and Annette Etges
Marie’s laugh is infectious. When she laughs, her whole body shakes and everyone around her laughs with her. Marie is a very special person, she needs help from others around the clock. She sits in a wheelchair with chameleons stuck to the wheels. But because she can barely see, she can hear particularly well. When her father or mother say her name, she smiles happily.
We meet Marie with her siblings and her parents Ines and Uwe at the Balthasar Children’s and Youth Hospice in Olpe. A children’s hospice is a place where families who have a seriously ill child come. Just like Marie’s family. As many as 4000 children in Germany fall terminally ill every year. Some of them are cared for at the Balthasar children’s hospice.
Lisa-Marie Scherer from Balthasar with Marie
From the entrance, you can see a colourful wall of red, blue and yellow handprints. When Marie came to Balthasar for the very first time, she was also allowed to immortalise herself on the wall. Every child who comes here is allowed to do so. „The colourful wall of hands is our guest book“, says Lisa-Marie Scherer, who works at the hospice.
A hospice is a sad place? But not always!
Some people believe that a hospice is a sad place because people sometimes die there. But anyone who has ever been a guest at a children’s hospice knows that it is a place where there is a lot of laughter, which is why Marie feels so comfortable here. Hospital clowns come to the children’s hospice to make the children happy, there are also colourful pictures on the walls and lots of fun games. Because if a child is already so ill that they might die earlier than others, they should be able to really enjoy every day here. For example in the Snoezelen room.
Marie loves the room. Her father lifts her out of her wheelchair and onto the waterbed in the centre of the room. She lies in his arms. Theresa and Lukas, her triplet siblings who are visiting, lie down next to her and „chill“. The room feels a bit like a spaceship film. A disco ball hangs from the ceiling, throwing colourful dots onto the walls, a lava lamp bubbles in muted colours at the entrance and the lights are dimmed. Marie and her dad enjoy the sloshing of the warm water beneath them. And the siblings relax too: The great thing about the children’s hospice is that it’s not just the sick children who feel at ease here, but also the healthy ones, like Theresa and Lukas.
The whole family together in the Snoezelen room
After the visit to the Snoezelen room, Marie is allowed to go to the playroom. „Daddy“, she says and he carefully lifts her into the sound bed. This is a kind of wooden seesaw on which music can be played on the left and right. On one side you can drum with your hands, on the other side there are strings attached that sound like a guitar. The great thing about it is that Marie can feel the sound waves through the wood she is lying on, which relaxes her muscles. Her lacquered fingers stretch out long and are no longer clenched into a fist. However, the relaxation only lasts until her dad drops his key. Marie hears this and starts to laugh out loud. Everyone in the room joins in. Marie’s laughter comes from deep inside her.
Marie is different from other children, she lives with a disability
Marie’s brain doesn’t work like that of other children. She can’t actually speak, but she still says „Mummy“ and „Daddy“ – and „Mimi“, which is what she calls herself. Or raises her hand to signal that she would like a cuddle now. Marie loves to cuddle. And her siblings and parents accept this.
A lift for Marie
helps to make everyday life at home easier
Four weeks a year, Marie is allowed to come to the children’s hospice, sometimes with her family, sometimes without. She cannot eat and is fed through a tube that goes directly into her stomach. When she goes to school in the morning – because yes, Marie goes to school too – a carer accompanies her. Marie also often needs medication, day and night, so someone always has to be awake to look after her. That’s why a carer helps her parents at home. A nurse comes to the house and helps Marie so that her parents can sleep. Her parents still take care of the 15 to 17 washing machines a week themselves.
The best therapy is her triplet siblings
„This is the thumb that shakes the plums“, says her father and touches Marie’s finger. She does what she loves best: she laughs. Another little hospice resident bounces around next to her and a song plays from her little tablet: „Thank you so much for the flowers, thank you so much, how much I love you“.
„The best therapy is that our children are triplets“, says Ines. Marie lives in the middle of a large family and has heard the words „dad“ and „mum“ so often through Theresa and Lukas that she can simply speak them, even though the doctors think it is impossible. Nobody has yet found out what illness she actually has.
Relaxing: Theresa is Marie’s triplet sister and loves coming to Balthasar
Marie and her siblings were born prematurely, in the 30th week of pregnancy, ten weeks before the actual due date. Lukas weighed 1400 grams, a little more than a milk carton. Theresa weighed 1600 grams. And Marie, the third, weighed just 790 grams, less than a tin of ravioli. At first, she was the fittest of the three. At around six months, however, it became apparent that Marie had severe brain damage and severe epilepsy. The doctors concluded that Marie would never learn to walk and would always need nappies. Perhaps she would also not grow as old as her siblings.
"All three are really great"„You have to take gifts as they come. Even if a corner is missing“, says mum Ines, referring to her children. „All three are really great.“ Marie can’t walk or eat. But she has a very special instinct for situations. She immediately realises when something is wrong. Or when the mood is good. „We really don’t need pity,“ says her mum. She calls Marie „little angel“ or „rascal.“ The little angel doesn’t like it when mum is on the phone, then she turns into a rascal and protests loudly.
As long as she’s laughing: Marie enjoys her time with her family at the hospice
Lukas would like to become an insectologist later on. Theresa would like to work in an integrative kindergarten, i.e. an institution with disabled children. Her sister has influenced her. And she? She just wants to live! And keep laughing. Because as long as Marie laughs, everyone around her smiles.
Info box: A children’s hospice is a place of encounter. This is where terminally ill children are cared for. The difference to an adult hospice is that it not only cares for people in the phase shortly before their death, but much earlier. A children’s hospice is there to give the whole family strength, because life with a seriously ill child is not always easy. Families with children who have an incurable, life-shortening illness can be admitted. The children’s hospice is staffed by paediatric nurses, educators and bereavement counsellors. Physiotherapists and occupational therapists also come to the centre when needed.
The Balthasar Children’s and Youth Hospice in Olpe was opened in 1998 as Germany’s first children’s hospice, and many who have been there describe it as a „second home“. Balthasar has eight places in the children’s hospice and four in the youth hospice. Families with seriously ill children are entitled to 28 days a year in the children’s hospice. Everything beyond this is financed by donations. The funding body covers around 30 per cent of the costs. 70 per cent, or more than 1.2 million euros per year, must be financed by donations. Parents can still visit after the death of their child.
Donation account of the Balthasar Children’s Hospice:
Children’s and youth hospice foundation
Account 190 11
Pax Bank Cologne
Sort code 370 601 93
BIC: GENODED1PAX
IBAN: DE 23 3706 0193 0000 0190 11
Please write your full address in the reason for payment so that a donation receipt can be sent
