By: Sheila, Parent of Owen, a 5 year old with a 16p11.2 Deletion
“Never under estimate your child or yourself.”
What is your child’s relationship like with his/her siblings?
Owen is the youngest of 3 with a large span between them all (25, 24 and 5). Our oldest, Chelsea, does not live at home but cared for him when he was age 1-2 each Friday while Mom and Dad worked. She learned how to do tube feeds and do therapy tasks. Owen loves his “sissy” His big brother, Noah, is the best big brother. He learned how to care for a medically fragile sibling from a young age and makes sure to include Owen in his activities. Owen has brought out the best in the both of them.
What does your family do for fun?
We have a camper and go as much as we can. We also love to be near the water to boat or swim. Owen is all about speed so Dad and the boys enjoy monster trucks and Nascar. We are also big Detroit Lions fans.
Tell us about the biggest hardship your family faces.
Owen has had several medical issues, some resolved and others ongoing. Juggling his care, the needs of our 2 other children, jobs, and our marriage has been an up and down task. We have learned to strengthen our patience, use humor, and accept help from others.
What about your child puts a smile on your face?
Owen is such a character. He is an imp with strawberry blonde hair and an infectious laugh. If you get him laughing hard, he starts to snort just like his mom. He is fighter and has overcome so much.
What motivates you to participate in research?
We wanted to be able to turn Owen’s difference into a positive impact for more than just us. Also, when Owen was 1st diagnosed, it was a comfort to learn there were others out there who had craved information and had shared what they knew/experienced. We want to do that for other families learning of their child’s uniqueness.
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)?
Owen participated in the Boston study from less than 1 yr and on. He was one of the 1st children diagnosed/participated as an infant.
What have you learned about your child’s condition from other families?
The variance in this syndrome yet the needed strength, love, and humor that is shared by us all.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Never under estimate your child or yourself.
What is one question you wish researchers could answer about your child’s genetic change?
I have no specific questions, but am eager to learn of their continued findings.