Ross’ Story

By: Russel, Parent of Ross, an 18 year old with a CHD2 genetic change

” Love yourself for who you are.”

What is your child’s relationship like with his/her siblings?

Prefers to be on his own doesn’t really interact with his brothers and sisters.

What does your family do for fun?

Trips to seaside, swimming, feeding the ducks, visiting the zoo, visiting the deep (it’s like a very big building with lots of different huge fish tanks).

Tell us about the biggest hardship your family faces.

Our son not being able to live a normal life by himself, fall in love and have a family of his own breaks my heart.

What about your child puts a smile on your face?

You can wake up in the worst mood ever but Ross always puts a smile on our face.

What motivates you to participate in research?

I would like to learn more about CHD2 we always knew it wasn’t just autism he had.

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)?

This is all new to us I’m hoping we could all learn more from each other.

What have you learned about your child’s condition from other families?

Nothing yet, Ross only got diagnosed with CHD2 today by doing 1001 genetics.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

Live life to the fullest. Enjoy life. Love yourself for who you are.

What is one question you wish researchers could answer about your child’s genetic change?

How did this happen are we to blame in any way?

Is there anything else you would like to share with other families?

Ross is a very happy young man but does like his company doesn’t really like interacting with others. For some reason he likes to RIP his t-shirts constantly and chew on zips and buttons and tends to hit himself on his head frequently.