Highland Magnet School
Hypermobile Ehlers-Danlos Syndrome
Club's City, State:
Bend, OR
Service Hours:
Date Adopted:

Meet Rex

Read Rex's Story

Rex looks like a typical healthy 8-year-old boy, but he has many medical issues that started showing up when he was a toddler.

His speech was delayed, so he was tested at OHSU in Portland. The diagnosis was apraxia of speech, an issue that affects the ability to form words. Rex then began speech therapy.

Rex had developmental delays as well and began occupational and physical therapy at 3 years old.

When Rex was 4 ½ years old he began experiencing neck pain. Tests were done which confirmed some major issues with his spine.

Genetic testing resulted in the diagnosis of Hypermobile Ehlers-Danlos Syndrome. This is an inherited connective tissue disorder that is caused by defects in a protein called collagen. It is generally considered the least severe form of Ehlers-Danlos syndrome (EDS) although significant complications can occur.

Rex also experiences sleep apnea and insomnia. Most significantly, he will need surgery to detether his spinal cord, which is pulled down and stuck, or fixed, to his spinal canal. The spinal cord normally floats free inside the spinal canal.

Despite his physical issues, Rex is very active and enjoys fishing and camping with his family. He likes being outdoors and playing with his brothers. He really loves his two therapy dogs, Frankie and Lilly.

Rex will be adopted as a Sparrow to Highland Magnet School. Highland students will work hard to raise money for Rex through sponsored community service.