Anonymous Story #5
By: Tracey, the parent of 2 children with a rare genetic change
“Live your life as if this deletion didn’t exist! Yes have everything checked out, but don’t let it consume who you truly are!”
What is your child’s relationship like with his/her siblings?
What does your family do for fun?
Spend time together
Tell us about the biggest hardship your family faces.
Behavioral problems with our two children with the deletion.
What about your child puts a smile on your face?
The funniest jokes and being silly!
What motivates you to participate in research?
To learn more about this and help others.
What have you learned about your child’s condition from other families?
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Live your life as if this delete didn’t exist! Yes have everything checked out, but don’t let it consume who you truly are!
What is one question you wish researchers could answer about your child’s genetic change?
What ALL is affected by this??