It's a touching scene from Tabea Hosche's first documentary about her family.

In it you can see the journalist at the hospital bed of her eldest daughter Uma, who is around four years old.

The door to the room opens and Uma's little sister, Ebba, who is walking safely just now, looks carefully into the room.

When she sees her mother, a smile goes over her face and she runs towards Hosche.

Ebba picks them up.

From the exposed perspective, the one-and-a-half-year-old looks at her sister in bed, who is wearing a bandage around her head, and her big eyes are suddenly very serious.

Eva Sleeper

Editor in the "Life" section of the Frankfurter Allgemeine Sonntagszeitung.

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Uma, the 11-year-old daughter of Tabea Hosche, has such a rare genetic defect that the complicated name of the syndrome should not be mentioned here.

The spontaneous gene mutation manifests itself, among other things, in the fact that the brain does not grow as it should.

The consequences are mental impairment and a skull that is too small.

This in turn means that everything is very tight in the head.

Uma is extremely hard of hearing because her ear canals are very narrow.

This is one of the reasons why she has a speech development disorder.

At the age of three, when Hosche was pregnant with Ebba, Uma also had epileptic seizures, which, however, are not a main feature of the actual illness.

Honest insight into everyday life 

As a filmmaker, 42-year-old Hosche from Uma's birth took moving pictures of her daughter with her mobile phone as a matter of course. In 2013 she started filming for a WDR documentary to capture from the inside out how she and her husband cope with life with Uma and her healthy little sister Ebba. Joseph has also been part of the family since 2018. In her meanwhile three films, Hosche is concerned with an honest and unadorned insight into everyday life. It shows, among other things, that the brothers and sisters of handicapped or chronically ill children are also challenged.

They are sometimes called “shadow children”, and even if most of those affected may not be able to identify with this designation, it is correct in that the healthy children usually get much less attention from their parents than the impaired siblings. On the one hand, this is due to repeated hospital stays, during which the mother is usually by the side of her sick child. And of course it is due to the fundamentally increased care that a disabled child needs.

Tabea Hosche says that Uma was not only their first child, but also the first grandchild in the family.

She says: “I had the impression that Uma would also be good to have a sibling.

I have certainly thought that in this sibling relationship issues would probably play a role that do not exist in other relationships, but overall I had a clearly positive feeling about the idea of ​​a second child coming into our family. "

Siblings benefit from each other, but not only

This feeling was confirmed after the birth. In the first few weeks and months there was another being who needed unrestricted attention at certain times, for example while breastfeeding. Uma had to accept that, and she learned that too. Then she benefited from Ebba's developmental steps: The little sister grew up, pulled Uma with her and thus also promoted her development. The two became allies. For a time Ebba understood her older sister better than her parents did; she then "translated" for you.