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.”