By: Wendy, Parent of Apollo, a 12 year old with a 16p11.2 deletion
“Your child is unique, try your best to help together with professionals (doctors, teachers) and enjoy the journey with your precious one.”
What is your child’s relationship like with his/her siblings?
Apollo would love to have a brother or sister but unfortunately he is the only child in our home. Apollo would be a very caring and lovely big brother if he got brothers/sisters to look after.
What does your family do for fun?
In winter time Apollo loves to skate, hockey so we run to ice rinks a lot in Winter time. In summer mostly you would see Apollo playing soccer with his teammates, while mom and dad cheer for him on the sidelines. We all love movies so Cineplex is a frequent place too. Then camping in summer time is so much fun that we would camp two to three times every summer.
Tell us about the biggest hardship your family faces.
So far it would be the days before Apollo’s diagnosis and we were like walking in the darkness. Confusion, depression, frustration and anger were felt every day, but good news is that we walked out of it! We accept Apollo as he truly is and help him to achieve his full potential.
What about your child puts a smile on your face?
1. Apollo likes to say ‘ Mom I love you!”
2. Apollo achieved what he thought to be difficult and said ‘ Yeah, I did it!’
3. Apollo help me with house work
4. Apollo tells a funny story in his school or a pure imaginary one.
What motivates you to participate in research?
Educate myself about the 16p11.2 deletion and how to help Apollo connect with other parents and exchange notes, experiences, support each other.
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)?
What Simons Searchlight did is unique and means a lot to our parents, no other place do that, I hope our contribution to the study would have been useful to your research.
What have you learned about your child’s condition from other families?
We learned that we are not alone and be positive always.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Your child is unique, try your best to help together with professionals (doctors, teachers) and enjoy the journey with your precious one.
What is one question you wish researchers could answer about your child’s genetic change?
Which essentials (for developing) would be missing due to the 16p11.2 deletion and how to tackle it?
Is there anything else you would like to share with other families?
Lots of exercise would help both physically and mentally.