Roman’s Story Living with PPP2R5D

Participate in research, connect with other families.

Rachel, parent of Roman, a 2-year-old with PPP2R5D

What do you do for fun?

Cook together, play with our dogs, nature walks, and we enjoy our weekly family outing for coffee/hot chocolate.

Tell us about the biggest hardship you face.

The unknown, not knowing what my sons future will look like and what challenges will come our way.

What motivates you to participate in research? 

To learn more about Jordan’s Syndrome and to help others.

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

How we can help mitigate any hardships or issues our son may face.

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

That even though they may share a lot of similarities, they are all unique.

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

Participate in research, connect with other families.

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