By: Katrina, Parent of Re’Jae, a 7 year old with a 1q21.1 Deletion
“Reach out to other families or support groups, spend as much time with them and never accept just any reports research and network as well.”
What is your child’s relationship like with his/her siblings?
She loves her sister and brothers, she’s rough and fiesty but constantly asks about them when they are not in sight.
What does your family do for fun?
Hang out at home, shop and visit grandma.
Tell us about the biggest hardship your family faces.
People not understanding that although my child is 7 soon to be 8 she has the mind and mannerism of a much younger child.
What about your child puts a smile on your face?
Her resiliency and personality, which has earned her the names “Miss Sassy/Personality”.
What motivates you to participate in research?
The desire to learn more about my child as she grows older.
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’m not sure maybe I can offer answers to unknown questions as well as encouragement.
What have you learned about your child’s condition from other families?
Not much just that every case is different and about other various symptoms that may be experienced.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Reach out to other families or support groups, spend as much time with them and never accept just any reports research and network as well.
What is one question you wish researchers could answer about your child’s genetic change?
Is there any known life expectancy age for children with this deletion?
Is there anything else you would like to share with other families?
Trust and believe that God would not put more on you than you can bear. My youngest is my anchor and my biggest blessing.