SYNGAP1 Family Story

By: the parent of a child with a SYNGAP1 genetic change

“Accept it, but don’t reconcile with it. Your child will learn at a slow pace, but will make progress all the time.”

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

She is ignoring him. But he is only 4 months old.

What does your family do for fun?

Swimming, walking, listening to music, going to concerts, going to the playground, going on trips..

Tell us about the biggest hardship your family faces.

Misunderstanding due to speech impairment, every task requires a lot of energy.

What about your child puts a smile on your face?

Her laugh, perkiness, playfulness

What motivates you to participate in research?

Hope that it will help understand SYNGAP1 and help the research of it

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

That all face problems with fine motor skills and speech. All children bite and have some sort of social disorder or sensory integration problems.

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

Accept it, but don’t reconcile with it. Your child will learn at a slow pace, but will make progress all the time.

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

How can we realize our child’s true potential?