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Help us on our mission of finding a cure for INAD/PLAN. Rex’s family is fundraising to help us bring our gene therapy program to a clinical trial:


5 Years Old | Texas, USA

About This Superstar

Age of Diagnosis

How INAD Has Impacted Their Life
Rex’s life has been greatly impacted by INAD. He was able to walk with a walker, crawl, sit, play with toys, eat by mouth, drink by mouth. INAD took this all from him. We strive everyday to give Rex the best quality of life through every stage of this disease.

Favorite Activities
Floating in his hot tub, watching our farm animals, hanging with mom,

Favorite Foods
Rex’s all time favorite food was blueberries. He is fully fed through his g tube now.

Favorite Television/Movie Character
Mickey Mouse

Favorite Books
Rex loves sensory pop out books or anything with sensory touches or sounds

Parent’s Favorite Motto or Expression
You are your child’s best advocate.

What They Would Like the World to Know About Their Experience Living with INAD
I want the world to know that Rex has been such a blessing to our family. His smile is magical and he is such a strong brave boy. He is everything that is good in the world. We will continue to spread awareness for INAD and fight for a cure.

Special Fun Facts
Rex has 2 older brothers who adore him. We live on a small farm. We find animals to be very therapeutic and they bring our family lots of joy. We love traveling and Rex has traveled all over the country in our camper. He has been to many different beaches.

To share your child’s story with us fill out our Child Stories Form