Angel-Lilly’s Story

By: Amanda, Parent of Angel-Lily, a 4 year old with a 16p11.2 duplication

“Don’t read too much up on it and take it day by day”

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

Can be okay other times not.

What does your family do for fun?

We plan around our daughter we do like soft play and going to the beach

Tell us about the biggest hardship your family faces.

Taking it day by day not knowing what’s next

What about your child puts a smile on your face?

Everything, she is unique

What motivates you to participate in research?

Because there seems to be similar traits with everyone but some unique cases too

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 learning

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

To take it day by day learning just has to be learnt over again before she will understand

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

Don’t read too much up on it and take it day by day

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

What will her future be like

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

Because I have other children I always knew something was not right and I didn’t give up till I had answers