Nehemiah’s Story

By: Monica, Parent of Nehemiah, an 18 year old with a 16p11.2 Deletion

“Treat him or her as normal. This will show them that there is so much they can do and there is no limits.”

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

It is good. Normal sibling rivalry.

What does your family do for fun?

Movies and traveling

Tell us about the biggest hardship your family faces.

The unknown with our son becoming an adult. Before it was just getting him the services that he needed, now it is so much more.

What about your child puts a smile on your face?

His smile and the achievements that he has made despite his disabilities.

What motivates you to participate in research?

We didn’t know abut the genetic disorder. There was no test when, I was pregnant with our son nor when he was born. We want to help others to show what progress our son has made as he has been dealing with this for 18 years.

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)?

By showing how a child can still have a productive life despite the genetics. That not every child is the same.

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

That not every child is the same and there are other disorders that can come with the genetics ones.

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

Treat him or her as normal. This will show them that there is so much they can do and there is no limits.

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

Will there ever be a way to fix it?

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

Our son is graduating next month. He has the larger band of the 16p11.2 deletion, autism, seizures and scoliosis. I wouldn’t trade him for anything in the world. He has brought out a patience and understanding to our family and friends that has made us all better.