By: Misti, Parent of Cooper, a child with a PACS1 genetic change
“Be still, be patient and prepare yourself for your life to change.”
What is your child’s relationship like with his/her siblings?
It’s very sweet most of the time and others coppers behavior can be aggressive provoked and unprovoked.
What does your family do for fun?
Recently visited a petting zoo , however Cooper was more interested in the planes in the sky and and cars passing by.
Tell us about the biggest hardship your family faces.
Outings and the public’s perception of Cooper and finances.
What about your child puts a smile on your face?
His character and sweetness about him.
What motivates you to participate in research?
To learn more and educate others.
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)?
I try my hardest to understand your version but is much easier when presented in an elementary type layout of the gene change.
What have you learned about your child’s condition from other families?
I have learned that our children do not represent The old saying ” no child is alike ” our children are so much alike in so many ways… and helps to know we are not alone on this journey.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Be still, be patient and prepare yourself for your life to change.
What is one question you wish researchers could answer about your child’s genetic change?
Can his misspell be corrected ?
Is there anything else you would like to share with other families?