Stryder D.

Condition: Ehlers-Danlos Syndrome
City, State: Prineville, OR
Club: Crook County Middle School Sparrow Club Service Hours: 317
Date Adopted: 3/20/2012

Stryder's Story:
Stryder is an amazing 4-year old little boy with a contagious smile and a personality that makes you laugh. You would never know that he is battling for his very life each and every day. Stryder’s problems began when he was 3 months old and very underweight. His parents, Angela and Warren, deleted milk and dairy from his diet and he began gaining weight. At 18 months old, he could only say 2 words. He began Early Intervention. He was diagnosed with sensory processing disorder as well as other disabilities. He began speech therapy with no improvement.

The family moved to Prineville in the summer of 2010 to be closer to family. Stryder’s condition continued to worsen. You could not wash his hair or brush his teeth without causing him to shake, have convulsions and turn blue. He could not stand loud noises. Testing for Autism came back negative. Stryder began attending preschool. He still couldn’t speak more than 10 nonsense words. His parents were referred to the Mayo Clinic.

In August 2011, Stryder was able to see a leading speech physician at Mayo Clinic. They diagnosed him with Childhood Apraxia of speech, a sleep disorder and discovered that he was having seizures at night. After returning home, Stryder’s teachers at school noticed that something was different about his legs. He was taken to Shriner’s hospital to have his hips checked. They were told that he was built like a child with Down’s syndrome and there was nothing they could do. The family then returned to Mayo clinic in September. Stryder underwent 6 weeks of intensive speech therapy and progressed very quickly. However, doctors still felt there was something wrong.

It was then that Stryder was diagnosed with Ehlers-Danlos Syndrome, a disease that causes problems with collagen, the substance that provides strength and structure to skin, bone, blood vessels and internal organs. Ehlers-Danlos Syndrome is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels. Children of Stryder’s age are never diagnosed with this condition which is why doctors did not test for it sooner. Angela and Warren were told that their little boy should not do anything physical and that he should be in a wheelchair. They were told that Stryder could rupture his internal organs at anytime and die suddenly. They were also told that there was a good chance their little boy would never survive past the age of six.

Angela and Warren don’t know how much time they have left with their little boy as his condition worsens almost daily. They are letting him just be the beautiful happy little boy that he is, running and playing while in constant pain. They know that soon enough he won’t be able to walk anymore but are doing what they can to prevent it. He dislocates his joints often and has allergic reactions to anything at anytime. He has a pancreatic disorder, hydrocephalus, heart problems and can have an aneurysm at any time.

Sparrow Cash raised for Stryder will help pay for travel and medical expenses for the family to take Stryder to Baltimore, MD to see a doctor who specializes in this disease.

Thank you to Facebook Prineville Data Center, SunWest Builders and The Detweiler Family for providing the Sparrow Cash that students at Crook County Middle School will “earn” for Stryder by completing a minimum of 256 hours of community service.

sponsor(s):

Facebook Prineville Data Center
Facebook Prineville Data Center



SunWest Builders
SunWest Builders