Michael’s Story

By: Antoinette, Parent of Michael, a 19 month old with a 16p11.2 Deletion

“Our babies our one of a kind and they are amazing little people!!! God blessed us with these little ones cherish every moment!”

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

He doesn’t seem very impressed with the younger sibling (3 months old) but ok with the older sibling (8)

What does your family do for fun?

Play, laugh, joke around, arts & crafts, go for walks

Tell us about the biggest hardship your family faces.

The unknown of what is going to happen with our son.

What about your child puts a smile on your face?

His smile is contagious! He LOVES to dance and he loves to HUM!!! He’s so silly and he’s an amazing boy we are beyond blessed!

What motivates you to participate in research?

To help others who will go through this.

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)?

Its a learning experience!

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

We are just starting with learning but so far we know we have A LOT of support.

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

PRAY! Love your baby extra!

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

Why did this happen?

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

Our babies our one of a kind and they are amazing little people!!! God blessed us with these little ones cherish every moment!