FAMILY STORY

Cameron’s Story Living with an SLC6A1 Diagnosis

“There’s been an unexpected amount of peace from sharing our struggles and victories with others.”


By: Katie, parent of Cameron, a 3-year-old with SLC6A1

What is your family like?

Cameron is 3, the youngest of our daughters. She adores her sisters Logan (9) and Mclain (7).

What do you do for fun?

Cameron loves to play outside, swim, water slides, camping, and riding her balance bike.

Tell us about the biggest hardship you face.

The biggest hardship we face is not knowing Cameron’s future while also watching her struggle to understand.

What motivates you to participate in research? 

I am motivated to participate in research to learn and help others learn about SLC6A1.

What is one question you wish researchers could answer about this genetic change?

How do we to ensure our kids can learn and catch up to their peers?

What have you learned about your or your child’s genetic condition from other families?

I have learned how much SLC6A1 mutations vary.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

I would say to talk to someone- find another parent that understands and share your journey. There’s been an unexpected amount of peace from sharing our struggles and victories with others.

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