BCL11A Story #1
By: Nicole, Parent of 14 year old with a BCL11A genetic change
What is your child’s relationship like with his/her siblings?
Amazing. They’re best friends.
What does your family do for fun?
Travel, support our kid’s interests in sports and music.
Tell us about the biggest hardship your family faces.
The unknown of this diagnosis.
What about your child puts a smile on your face?
His sarcasm, wit and sense of humor.
What motivates you to participate in research?
Getting answers to the questions we all have.
What is one question you wish researchers could answer about your child’s genetic change?
What does this diagnosis mean to my son? He doesn’t seem to fit the typical child with this genetic condition.
Is there anything else you would like to share with other families?
My son is 14 and has been told he’s the exception to this genetic condition. He has no intellectual disabilities. He does have Glaucoma and very mild CP. He suffers from daily migraines, ADHD. He has chronic tics of varying type and impaired coordination of his upper extremities.