Anonymous Story #4
By: the parent of a 17 year old with a rare genetic change
“Get all the help and support you can”
What is your child’s relationship like with his/her siblings?
What does your family do for fun?
Tell us about the biggest hardship your family faces.
Worrying about our son’s future
What about your child puts a smile on your face?
His sense of humor and honesty
What motivates you to participate in research?
To know more
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?
Get all the help and support you can
What is one question you wish researchers could answer about your child’s genetic change?
Is there anything else you would like to share with other families?
He has bladder issues