By: Karolina, Parent of Filip, a 12 year old with a CSNK2A1 genetic change
“…you have to fight for a better tomorrow. You must never give up.”
What is your family like?
My family consists of three people: me, Karolina; and my husband, Bartek; and Filip, who is sick with Okur-Chung Neurodevelopmental Syndrome. Filip is 12 years old. We live in Poland.
What do you do for fun?
We like to play board games, we love to ride a bike and we like to bake various cakes together with Filip.
Tell us about the biggest hardship you face.
Our biggest problem is that Filip is short. Unfortunately, children very often, but also not only, tease Philip a lot because of this. Filip does not like maths, it is a great abstract for him.
What impacts your decision to participate or not to participate in research?
Unfortunately, a language barrier.
What is one question you wish researchers could answer about this genetic change?
Can they be more independent as an adult? Can the syndrome cause major changes in adulthood?
What have you learned about your or your child’s genetic condition from other families?
Unfortunately, I know very little about this disease because in Poland, the knowledge of doctors about this disease is very small.
If you could give one piece of advice to someone recently diagnosed with this genetic change, what would it be?
That you have to fight for a better tomorrow. You must never give up.