By: Becki, Parent of Mia, an 8 year old with an ANKRD11 genetic change
“Keep researching and keep in touch withe other Families and don’t let KBG be swept under the rug because it’s not well known”
What is your child’s relationship like with his/her siblings?
Very close, loving and have a great bond with her.
What does your family do for fun?
Any out door activities spend time with each other
Tell us about the biggest hardship your family faces.
What about your child puts a smile on your face?
Her living personality, when she smiles her eyes shine and she brightens up the room
What motivates you to participate in research?
You don’t know what you dont know
What have you learned about your child’s condition from other families?
That we are blessed and fortunate that she is on the lower end of the spectrum
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Do as much research as possible get in to KBG forums. You will learn more from families than most specialist.
Is there anything else you would like to share with other families?
Keep researching and keep in touch withe other Families and don’t let KBG be swept under the rug because it’s not well known