Myles’s Story Living with DYRK1A
Take a DEEP breath. It will be ok.
Amy, parent of Myles, a 4-year-old with DYRK1A
What is your family like?
We are a close knit family that live in rural Oklahoma. We are hard working family to stop at nothing to provide and receive services for Myles.
What do you do for fun?
We enjoy watching him do water and horse therapy. We enjoy playing with our two boys.
Tell us about the biggest hardship you face.
We live so far from providers and services that Myles requires.
What motivates you to participate in research?
To get more research and answers about his genetic condition.
How do you feel you are helping Simons Searchlight learn more about rare genetic changes?
I am providing data and surveys.
What is one question you wish researchers could answer about this genetic change?
I wish I knew if it affects their life expectancy. What will my boys’ future look like.
What have you learned about your or your child’s genetic condition from other families?
I was able to find a private Facebook group to learn and share questions.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Take a DEEP breath. It will be ok, I know this is earth-shattering news. Your child will make leaps and goals in their own time.
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