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FAMILY STORY

The Baileys’ Journey With ASXL3

I participate in research because I'm passionate about potentially easing the lives of families like mine.

Joanna Bailey, mother of Juniper, her 5-year-old daughter with ASXL3-related syndrome

What is your family like?

We are a family of five from Michigan!

What do you do for fun?

We love to hang out together playing games and watching sports. We also love being in nature and traveling.

Tell us about the biggest hardship you face.

The biggest hardship we face is navigating our youngest daughter Juniper’s ultra-rare genetic condition. This diagnosis comes with many unanswered questions.

What motivates you to participate in research? 

I participate in research because I’m passionate about potentially easing the lives of families like mine.

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

I participate in every survey they send me!

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

How the change in the ASXL3 gene relates to pain and how pain symptoms can be more effectively managed.

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

So much! What to expect in the future as well as medication suggestions.

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

Get involved with the ARRE Foundation! They will be your greatest support.

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