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Cologne, Germany

Leonie was born in February 2015. She got her DESSH diagnosis shortly after her 5th birthday. Leonie lives with her father, mother, and a big sister (11) in Cologne, Germany.

She loves to play doctor and treat her family. She takes care of her baby dolls and loves to paint. In addition, she wants to be able to do everything her big sister does without exception.

She has been in kindergarten for three years and has an integrative care place there. The supervisors are all trained in dealing with handicapped children. And there are even therapy rooms in which the children who need it can receive occupational, physical or speech therapy. In summer Leonie starts school in a special school. At the beginning of the year she even learned to ride a bike.

Since her birth, her parents had noticed that something was different with Leonie. The pregnancy was normal. Her head was a little too small, but not too noticeable. The weight was 3050g and she was 48cm tall. As a child, she always was very sleepy and had trouble drinking from the start. At the insistence of her parents, while she was still in the hospital, it turned out that she had an iron deficiency and holes in her heart. However, these have grown together again to this day.

Since the ninth month, she has been receiving physiotherapy and speech therapy because her motor and verbal development was very delayed. She learned to walk when she was 25 months old. The developmental delay is evident in all areas, especially in her language. She generally has learning difficulties because it is difficult for her to focus on anything for too long and she is easily distracted. If she then wants to move, she usually runs away and is still not aware of the dangers.

With injuries and wounds, there was no response until she learned to say the word "ouch". Since the age of two, she only accepted pureed food. Today she is still very picky. Most of all, she struggles with the texture and consistency of her food.

She also has autistic traits. Deviating from fixed rituals or anything that happens outside of the normal program flow throws her off course. Hardly anything works without the full attention of her parents. When she was 4 years old, she was given glasses, especially because of severe astigmatism. She doesn't look like six years old, more like four.

Her parents no longer wanted to accept the general diagnosis of developmental delay. Then finally, after a lot of discussion in the therapy center, a genetic test was carried out at the beginning of 2020.

Her family loves her more than anything. Above all, because she shows them what is important in life.

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