Elise’s Story

By: Liz, Parent of Elise, a 3 year old with a FOXP1 genetic change

“Never quit on a goal you think is important . Break it down and celebrate the tiny goals they are big”

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

Loving, complicated, fun, hard work

What does your family do for fun?

The Lake, the pool, read and walks

Tell us about the biggest hardship your family faces.

The future is so unknown for our daughter with special needs

What about your child puts a smile on your face?

Her giggle, her innocence, her love

What motivates you to participate in research?

Helping

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)?

I’m educating others all the time

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

Possibilities are endless

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

Never quit on a goal you think is important . Break it down and celebrate the tiny goals they are big

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

Can we ever make her self sufficient

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

Cry when you need to cry; Laughs when it’s funny; Advocate when you see injustice