By: Kelly, Parent of Sydney, a 5 year old with a 1q21.1 Deletion
“Find a support group or community if you can. It may be hard to find the right one, but don’t give up.”
What is your child’s relationship like with his/her siblings?
The sibling relationship seems semi normal to me. They fight, they play and get along. But my child with the deletion is aggressive towards her brother.
What does your family do for fun?
We like to go to the park and watch movies at home.
Tell us about the biggest hardship your family faces.
The biggest hardship is just not know what is going to come next. We do well for a while, then regress. We are always trying to make sure are child had the best and is getting what she needs, and that is exhausting.
What about your child puts a smile on your face?
Her jokes, her quirky questions and her inquisitive mind. She has a good heat and is funny and sweet.
What motivates you to participate in research?
I want to know more about the deletion and how to help my daughter. I hope our participation in the research will help our daughter as well as other children and adults who have this deletion.
What have you learned about your child’s condition from other families?
I have not reached out yet, but I plan on doing so.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Find a support group or community if you can. It may be hard to find the right one, but don’t give up.
What is one question you wish researchers could answer about your child’s genetic change?
What can we do now to prepare her for the future?
Is there anything else you would like to share with other families?
I feel really isolated from other families and would like to reach out and share experiences with other families with deletions.