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Karl wants to live on his own

Karl recently learned how to drive. “I am generally a calm person but can get a little bit stressed when I am driving a car.” Karl is a resilient young man navigating through life both with CHARGE syndrome and the challenges of driving a car. He faced many challenges from the very beginning, but with support, he is now building a life of his own. 
Karl speaks sign language and lives with his family in a small town where there was little or no knowledge about CHARGE syndrome when he was born. 
Due to breathing problems, Karl was rushed to intensive care right after birth. He had surgery the next day, and for the first four and a half months of his life, he spent time in the hospital with his parents.
– It was a tough experience, Karl's mother states.
Karl was almost three weeks old when he got his diagnosis. A doctor who had worked at a children’s hospital in Texas recognised the symptoms.   
– We were told not to look it up on the internet, but we did. That was hard, and we never did it again, says Karl's mother.
Instead, the parents talked with the doctors to get answers to their questions and decided to see what would happen. What would the prognosis be and how could they help him improve in every way?
They got support from doctors and social workers. As no one spoke sign language in their small town, they had to seek help from an institution that teaches sign language. But they wish that there would have been better support regarding his education throughout the school years.

Karl wants to move to the capital

Now they just wish that Karl, in the future, can live by himself, be independent, get a job, and hopefully have a family. To achieve this, his parents wish to support him as much as possible. 
– Karl wants to move to the capital to be more in contact with deaf people. He would like to get an apartment on his own and be independent, says his mother.
If she could go back in time she would change a lot of things, especially to stand up more for herself and for her son's needs regarding education.
”If she could go back in time she would change a lot of things, especially to stand up more for herself and for her son's needs regarding education.”
– In my opinion, children with special needs, such as deafness, should have the opportunity to attend special schools where they can meet kids with similar problems. Deaf children have the right to the same opportunities as other children, but this is not the reality, and that needs to change.
”Karl lives at home with his family and enjoys computer games and sports.”

Cheers for Man United

Karl lives at home with his family and enjoys computer games and sports. His sister is playing basketball for a college team in the USA, and Karl watches every basketball game with his hometown team.
His favourite football team in the Premier League is Manchester United.
He has an assistant in school, and a sign language interpreter, who translates to him what the teacher is saying.  
– She is very good and a really good friend of mine, Karl says.
Karl also needs support when he goes shopping to be able to communicate with people who don’t know sign language. If he doesn’t have an interpreter at hand his parents or sister some​times help him. However, he does not need guided mobility.
Karl uses Signwiki, Messenger, and Snapchat to communicate. And he has a system at home that lights up when somebody rings the doorbell and a special alarm clock with a light that wakes him up in the mornings.
”I am generally a calm person but can get a little bit stressed when I am driving a car.”

Karl got his driver's license

– I am generally a calm person but can get a little bit stressed when I am driving a car. 
Karl hopes that this stress will disappear when he becomes a more experienced driver, but sometimes this anxiety means that he drives less.
– I prefer having one of my parents with me when I drive. They are really helpful, he says.