By: the parent of Finley, a 3 year old with a PACS1 genetic change
“Take a deep breath and allow yourself to feel all the emotions. Then start searching for other families. Those are the people that will help you through this unexpected journey we are all on.”
What is your child’s relationship like with his/her siblings?
Finley adores her siblings and they adore her! She gives them hugs and kisses and says their names.
What does your family do for fun?
We love spending time together at home. Snuggling, building with blocks, coloring, watching movies and tickling are some of our favorite things to do!
Tell us about the biggest hardship your family faces.
Thinking about when I am no longer here for Finley is one of my biggest fears.
What about your child puts a smile on your face?
Finley has the best belly laugh ever! It is infectious and one of a kind!
What motivates you to participate in research?
Learning more about PACS1 and being able to reach more families who are impacted by it.
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 feel that by being open about Finley and her life challenges will have a very positive and important impact.
What have you learned about your child’s condition from other families?
I have learned that although our kids have the same diagnosis and the same facial features, they are all so incredibly different. Once there are more people diagnosed I think it will be easier to find people who have children more similar to Finley.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Take a deep breath and allow yourself to feel all the emotions. Then start searching for other families. Those are the people that will help you through this unexpected journey we are all on.
What is one question you wish researchers could answer about your child’s genetic change?
Why are all the children all so different?
Is there anything else you would like to share with other families?
Find the poem “Welcome to Holland.”