Image Credit: Emily Barnes

Hadley’s Story Living with SYNGAP1

We are all in this together...Stay connected. Community and support are incredibly helpful.

Emily Barnes, mother of Hadley, her 6-year-old daughter with SYNGAP1

What is your family like?

Supportive! We have a son and a daughter Hadley who has Syngap1. We also have two dogs and a bunny.

What do you do for fun?

We love to swim in our pool and visit lakes and the beach. We spend a lot of time with extended family. Our kids love their cousins!

Tell us about the biggest hardship you face.

Hadley’s behaviors make it challenging to go places and our time spent is usually short due to her not adapting well to new environments. She often wants to be back in her safe space, which is at home.

What motivates you to participate in research? 

To help other families and hopefully find better treatments for our children.

How do you feel you are helping Simons Searchlight learn more about rare genetic changes? 

Knowledge is power.

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

If we treat seizures earlier, will the outcomes of development long term be improved?

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

We are all in this together. Tips and tricks to navigate life help us feel supported.

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

Stay connected. Community and support are incredibly helpful.

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