By Jon-Kristian, Osteogenesis imperfecta, Norway, December 16, 2020
My name is Jon-Kristian, but you can call me JK!
I am 12-years-old and I live in Norway with my family. I am living with a rare disease called Osteogenesis imperfecta.
I love hanging out with friends and I enjoy playing board games with my family. I love watching e-sport, working out on the rowing machine, playing computer games and I also really enjoy cooking. With the help of my personal assistant I plan, shop and cook dinner for my family once a week. It’s often a surprise to them what I’m serving.
My parents are sporty and help me get through tough times. They are my primary support, especially when I’m in the hospital for surgery or casting. My team of super cool personal assistants are also really supportive. They are aged 20-30 and help me with my daily routine, exercise, socialising with friends and after school activities. They make it possible for me to attend activities without being dependent on my parents – I don’t think it’s very cool to attend birthday parties or school discos with my parents being present!
Having my assistants also enables my parents work full time and enjoy weekend trips without me. This summer they had a midweek kayak trip for a couple of days whilst I was at home and at school. I love my parents, but it is so nice to be able to be independent and make decisions on my own.
Living with Osteogenesis imperfecta means I can’t play football or other contact sports like my friends. I am also not as independent as my friends. I can’t do what I want when I want. I need assistance in many everyday activities like getting ready for school. Often when I have fractures, I also need help going to the bathroom. But, without my disability I would not be able to go to Beitostølen. This is a rehabilitation centre where I have stayed 4 times. There I’m able to exercise, meet others with similar disabilities, swim twice a day, ride a bike in the summer and go skiing in the winter. A regular stay is 3 weeks. We try to attend two of the yearly gatherings, and I have friends there which I would not have if I didn’t have OI. I have also attended in a 15 minutes documentary in a series about disabled children showing on Norwegian television.