By: the parent of Alice, a 4 year old with a 1q21.1 Deletion
“The diagnosis doesn’t change who your child is. Your child is a gift from God and just does things a little differently.”
What is your child’s relationship like with his/her siblings?
She adores her little brother! He pushes her buttons on purpose, which causes conflict, but she loves to be around him.
What does your family do for fun?
Play at the park, read books, puzzles, music
Tell us about the biggest hardship your family faces.
We don’t know what her future will hold and what struggles she will face.
What about your child puts a smile on your face?
She is so funny and quirky! She is also kind and helpful. Her love and talent with music is amazing!
What motivates you to participate in research?
Because this is so rare, we need to be open about the condition.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
The diagnosis doesn’t change who your child is. Your child is a gift from God and just does things a little differently.
What is one question you wish researchers could answer about your child’s genetic change?
How likely will it be that my child will have an intellectual disability, or physical issues in the future?