What it’s like to have a sibling with Down syndrome


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from: Mary Sandy

There are about 50,000 people in Germany with trisomy 21. Many of them have siblings. But what does it really mean to have a sibling with Down syndrome? Portrait.

Bremen – Leonie and Thibaud Sturm are twins. The mother-of-two fondly says that Leonie is the big sister, even though they were born together. The difference between them is not only gender: Thibaud was born with another chromosome, he has the so-called. Down syndrome. Leonie has a normal syndrome, according to her parents.

Down syndrome awareness month

October is the National Down Syndrome Society’s official Down Syndrome Awareness Month. The aim is to focus on the abilities of people with Down syndrome and less on the impairments.

Brother with Down syndrome – “If someone annoys me, they protect me”

“If someone annoys me, they protect me. And if Tibaud gets angry, I’ll help him. I don’t want him to be left out or sad.” Leonie is hurt when someone talks about her brother, who has Down syndrome, or says he has a mental disability. She doesn’t think it suits him.

Leonie often holds up a mirror to her parents when she feels she is not getting enough attention from her family. Claudia and Rémy appreciate it. © Maria Sandy

The 9-year-old says that staying calm in such situations is a challenge for her. “He may look a little different and learn more slowly. But it doesn’t make much difference to me. For me, he is a person who can learn everything.

He may look a little different and learn more slowly. But it doesn’t make much difference to me. For me, he is a person who can learn everything.

Leonie sometimes feels slighted when her brother with Down syndrome gets more attention

When Thibaud receives more attention or support from her parents, Leonie sometimes feels slighted. She learned early on to openly communicate her problems: “I also say that it bothers me. Then we’ll find out.” Leonie wants to be an actress. “She loves acting because it allows her to be the center of attention,” says her mother, Claudia.

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What is Down syndrome (trisomy 21)?

Simply explained: What is Down syndrome?

Down syndrome is not a disease, but an immutable genetic trait. Instead of the normal 23 pairs of chromosomes in all human cells, the cells of people with trisomy 21 have an extra chromosome. Trisomy 21 is commonly associated with physical and mental disorders.

How long do people with Down syndrome live?

Life expectancy is 60 years. The oldest known person with Down syndrome died in 2012 at the age of 83.

Can people with Down syndrome have children?

Yes, people with Down syndrome can have children.

What is special about Down syndrome?

Children with Down syndrome (trisomy 21) usually require a lot of time and family care. Parents and siblings are often dependent on support. From Family Support Service can you help. Early intervention is very important for children with trisomy 21 and contributes to their development.

Children with different needs: a challenge for parents

For the parents of twins, Claudia and Rémy Sturm, it is not always easy to do justice to both children. “Their needs are different,” notes mother Klaudija.

“Of course, we don’t deliberately single out Leonie.” Often, though, the two focus more on Thibaud. He is like a little brother to Leonie and he needs more support, Father Rémy explains. Praise and appreciation also play an important role in raising a daughter. “Nevertheless, we often catch ourselves taking Leonie’s success or development for granted,” says Rémy.

Leonie and her brother Thibaud are watching TV.
When Thibaud receives more attention or support from her parents, Leonie sometimes feels slighted. But she learned early on to be open about her problems. © Maria Sandy

Down syndrome: “Of course, if Thibaud can do something that we don’t necessarily expect, we’re absolutely thrilled”

“When Thibaud creates something that we don’t necessarily expect, we are of course very happy about it,” says Father Rémy. Leonie often holds up a mirror to her parents when she feels she is not good enough…

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