Anonymous Story #2
What is your child’s relationship like with his/her siblings?
Good. She likes to play with her siblings.
What does your family do for fun?
Nature walks, beach, pool, park
Tell us about the biggest hardship your family faces.
My daughter puts herself in danger constantly. She does not understand hazards and has no fear. She does not talk so it is hard to understand her. We are worried about the future.
What about your child puts a smile on your face?
She is loving to people she knows. She is always happy. I am happy whenever she understands something.
What motivates you to participate in research?
I would like to find anything that could help my daughter, even a little bit.
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)?
Maybe this is a unique case.
What have you learned about your child’s condition from other families?
I’ve learned that many of her traits are common to other kids, and some are not. I’ve gotten a lot of advice.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Go to speech therapy and purchase a tablet with AAC app to help your child communicate.
What is one question you wish researchers could answer about your child’s genetic change?
How can we help mitigate their issues/hardships.