By: the parent of Harper, a 2 year old with a SYNGAP1 genetic change
“Be involved in the Facebook groups so you don’t feel alone”
What is your child’s relationship like with his/her siblings?
Harper gets along great with her sisters and brother. Lots of hugs and kisses for them and they can play for hours together!
What does your family do for fun?
Family movie nights, play outside, swim, go for walks
Tell us about the biggest hardship your family faces.
Communication, Harper is frustrated when she doesn’t get what she wants and can’t telk us. Her attachment to dad is a challenge as well. Epilepsy
What about your child puts a smile on your face?
Her siblings, music, little blue truck books!
What motivates you to participate in research?
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Be involved in the Facebook groups so you don’t feel alone
What is one question you wish researchers could answer about your child’s genetic change?
How severe will she be when she gets older? Will there be a treatment or cure?