By: Heather, Parent of Justin, an 8 year old with a 16p11.2 Deletion
“Keep doing what you are doing to help whatever difficulties/deficits your child faces. The diagnosis doesn’t change the treatment plan if you are treating what is already an issue.”
What is your child’s relationship like with his/her siblings?
Good, he definitely isn’t as close with them as they are with each other, but he has some great moments with them too.
What does your family do for fun?
We like the shore, spending time with family and friends, going to the zoo, aquarium, and places with animals. We like to be outside
Tell us about the biggest hardship your family faces.
Wishing our son had at least one real friend. He doesn’t mind, but we would like him to know true friendship
What about your child puts a smile on your face?
His smiling face and his innocence. Such a happy and sweet boy
What motivates you to participate in research?
To learn more about how we can help Justin
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Keep doing what you are doing to help whatever difficulties/deficits your child faces. The diagnosis doesn’t change the treatment plan if you are treating what is already an issue.
What is one question you wish researchers could answer about your child’s genetic change?
Will they ever be able to add the missing chromosome back into Justin? That would be so cool