Oz’s Story

By: Jane, Parent of Oz, a 2 year old with a 16p11.2 duplication

“Don’t stay up all night google-ing”

What does your family do for fun?

Going to the park to run or swing on the swings

Tell us about the biggest hardship your family faces.

Not knowing much about this genetic disorder

What about your child puts a smile on your face?

His adorable, playful personality.

What motivates you to participate in research?

Understanding more about 16p in regard to my son. As well as possibly helping the future parent receiving this diagnosis have more information available to them.

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

Nothing yet because we just joined

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

Nothing yet because we just joined

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

I don’t know the questions to ask yet because this is very new.