By: Bjorn, Parent of Vegard, a 14 year old with a 16p11.2 Deletion
“Get started early on with stimulus to get ahead as much as possible.”
What is your child’s relationship like with his/her siblings?
He is a very kind and considerate child. He is very much loved by all his three siblings.
What does your family do for fun?
With 11 years of age difference, it is hard to find activities that gather all of us. We enjoy travelling and have been around the world all the six of us. We play cards and games, especially when we are in the mountain cabin.
Tell us about the biggest hardship your family faces.
The learning challenges of our child is probably the biggest hardship. In addition the mother in the family has a few chronic health issues that are under control, but still causing some restrictions on activity levels.
What about your child puts a smile on your face?
When he comes and offers shoulder and neck massage.
What motivates you to participate in research?
To help other families early on to get the best treatment to maximise the potentials of the child.
How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight (16p11.2, 1q21.1, or single gene changes)?
Broadening the data collection to give more precise knowledge.
What have you learned about your child’s condition from other families?
Nothing special. (Yet!)
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Get started early on with stimulus to get ahead as much as possible.
What is one question you wish researchers could answer about your child’s genetic change?
Whether there may be a possibility for genetic therapy.