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Donia Shirley

Who’s In Your Family?

Nyle, 9 years old and Jaxson, 6 year old son with CHARGE Syndrome and our golden doodle Jazz

What do you want people to know about your family?

Our family lives in Florida, we love spending time exploring our community and hanging out with our family and friends!

Why do you Volunteer with the Foundation?

In the early days after Jaxson’s diagnosis it was the connections that we made with the foundation and other families that helped us to get our footing. I volunteer with the foundation to give and to make those connections and be there to support other families!

What activities do you like to do?

We love to do fun activities as a family, our favorites are going to the local science museum or the zoo, going on family walks and spending the day at the pool or the beach!

To contact your state’s Family Liaison, please email Lourdes Quintana at Lourdes@chargesyndrome.org.