Jacob’s Story

By: Rachelle, Parent of Jacob, a 7 year old with a 7q11.23 Duplication

“One day at time and progress not perfection”

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

Jacob is an only child. He loves to be involved in home and community events, but is on a restrictive schedule every day to reduce behaviors.

What does your family do for fun?

Church, clean, join ONF in area for social peer fun, arts and crafts, and community fun tasks.

Tell us about the biggest hardship your family faces.

Single parent household whom works a lot, but while managing child who has maladaptive behaviors, health concerns, and school issues. But, parent is an advocate to help him get his services and needs met.

What about your child puts a smile on your face?

His smile and joy for world.

What motivates you to participate in research?

To help others learn more about this disorder in the general public and professionals.

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

Similar GI, academic issues, behavioral issues, but how unique every kid is.

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

One day at time and progress not perfection.

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

Speech issues health issues on how professional-aka school can manage correctly.