Grayson’s Story

By: Natanya, Parent of Grayson, a 20 year old with a 16p11.2 Deletion

“Do not look as this in a sad way. The diagnosis is empowering and with it comes knowledge.”

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

Grayson is the oldest of four boys. G-Money (As his brothers call him) has a great relationship with his younger brothers, when his mental health is stable. When he struggles, they rally to support him.

What does your family do for fun?

We’re big sports fans and follow the local teams – Packers, Bucks, Brewers and Badgers. We also have a ton of pets – cats, dogs, guinea pigs, turtle, etc.. We also help manage a local specials ability baseball team (Challenger Little League baseball).

Tell us about the biggest hardship your family faces.

Grayson’s mental health is not always stable and this is difficult for the entire family. This has caused emotional and financial hardship.

What about your child puts a smile on your face?

Sports and more sports! Helping the younger kids at baseball – Grayson helps me manage a special needs baseball team.

What motivates you to participate in research?

When we first signed up for research studies in 1997, my thought was only that we could help future generations understand Grayson’s health issues (microthalmic eye, developmental delays, etc…) We never thought we would be linked up to the Simon’s team! Grayson traveled to Texas and Philadelphia for research, has been written up in medical journals. It is so great to know we are getting answers for our family and helping to build a database of knowledge for others.

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 being open and honest with the myriad of issues that have faced us medically, we can provide a wealth of information to the research team. Grayson’s birth defects and mental health struggles need to be understood, so others like him can get earlier treatment and intervention.

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

That we are not alone and that there is so much more to be learned.

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

Do not look as this in a sad way. The diagnosis is empowering and with it comes knowledge

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

We’re curious if there is a Syndrome associated with his 16p11.2 deletion. He has a microthalmic eye, autism and mental health issues – how does this all tie together.

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

Grayson is amazing. He is 20 years old and living in an independent apartment and completing an Easter Seals internship at a local hospital. He is considered off the chart brilliant/smart mathematically. He is kind and caring and a great person. His impact on my life and his brothers has been for the better – we are better people, less judgmental, give back to the community more, etc..