Anonymous Story #1
By: the parent of a child with a rare genetic change
“You’re not alone. And you’re doing the best you can. And you’re making the best decisions for your child.”
What does your family do for fun?
Golf, sit around the bonfire, play with our golden doodle, try and sneak off to Hawaii
Tell us about the biggest hardship your family faces.
The unknown future and the challenges that the gene will have on us. Knowing if we are doing enough to support our son.
What about your child puts a smile on your face?
Our son is always happy- he loves being around people!
What motivates you to participate in research?
Sharing our story to let others know they aren’t alone. We are a piece of this complicated puzzle. There’s a better chance of finding hope if all the pieces come together.
What have you learned about your child’s condition from other families?
There certainly are a number of similarities!
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
You’re not alone. And you’re doing the best you can. And you’re making the best decisions for your child.
What is one question you wish researchers could answer about your child’s genetic change?
What is the best form of leading edge treatment — has there been any research on the impact of neurofeedback? Best supplements?