JJ’s Story

By: Jeff, Parent of JJ, a 4 year old with a CHAMP1 genetic change

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

They are the biggest blessing in our lives

What does your family do for fun?

We go to the pool

Tell us about the biggest hardship your family faces.

Try to balance living a “normal” life and pushing our son to be the best he can be.

What about your child puts a smile on your face?

He loves to be around his mom and dad all day

What motivates you to participate in research?

Hope for treatment or cure, a better life for my son

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)?

I don’t know but I hope more than just informational data, I would like to see some tests.

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

Everything about the disease because there is little to no research

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

Trust God and rely on his strength. THIS IS HARD

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

When will you start investigating treatment options?

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

Feel free to contact me anytime. raisingachamp1@yahoo.com raisingachamp.com