By: Kimberly, Parent of Kayla, a 14 year old with an ANKRD11 genetic change
“Stay positive! Don’t dwell on the fact that your child has a condition or a syndrome treat them as an individual. A lot of people don’t like to label their child but sometimes in this day in age it’s a benefit as far as services and what is offered is available to them.”
What is your child’s relationship like with his/her siblings?
Very good! There is a 15yr gap between the two.
What does your family do for fun?
Shopping, arcade games, fishing, carnivals, fairs, exploring!
Tell us about the biggest hardship your family faces.
Not being able to give our 14yr old daughter the independence that she deserves and finding her friends and social acceptance.
What about your child puts a smile on your face?
Her acceptance and understanding of her issues and her patience with the doctor’s! Her love for animals
What motivates you to participate in research?
Knowing everything that I can about the syndrome and preparing me for what the future holds!
What have you learned about your child’s condition from other families?
Not much! By the time my daughter was diagnosed with the syndrome we had already had encounters with pretty much all the elements or symptoms of the syndrome itself.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Spread the word! The more a family knows about the history of the genetics and their family the more prepared they are for whatever comes their way!
What is one question you wish researchers could answer about your child’s genetic change?
Why! Did it have something to do with my age at conception or my body during the pregnancy or any other factors that my husband could have had or caused!
Is there anything else you would like to share with other families?
Stay positive! Don’t dwell on the fact that your child has a condition or a syndrome treat them as an individual. A lot of people don’t like to label their child but sometimes in this day in age it’s a benefit as far as services and what is offered is available to them.