Dream Bedroom, Accessible Bathroom

Ehlers-Danlos Syndrome

We’d like you to meet Jason. With his angelic nature and steadfast strength, he faces all of life’s challenges with a joyful disposition! SOARD provided a wheelchair accessible bathroom for this handsome fellow. Jason was born very small and very fragile. He was not eating or sleeping and became very jaundiced. He struggled tremendously to thrive and develop, but he was a fighter and kept surpassing everyone’s expectations. The first year of his life was spent in and out of the hospital being fed by tubes and put under bilirubin lights. After a year of medical intervention and tests, he received a long list of diagnoses to explain why he was experiencing atypical symptoms. His diagnoses include Ehlers-Danlos Syndrome, Koolen-DaVries Syndrome, Immunodeficiency, Chromosome 17 deletion, Mitral Valve Regurgitation, Crohn's Disease, Failure to Thrive with a feeding tube, and Juvenile Rheumatoid Arthritis. Though he has endured surgeries, experiences developmental delays and has significant medical needs, he never lets anything bring him down. He embraces the on-going services of specialists who work with him to achieve his goals including a Hospital Homebound Teacher, Occupational Therapist, Physical Therapist and Speech Therapist. He is working to improve his communication, mobility and activities of daily living including dressing and eating. Jason is exuberant, loving and incessantly optimistic. He deeply adores his older sister, younger brother and his Greyhound Habano. Jason's family was a perfect addition to the SOARD family!

Family Photos

Photography by Brandy Angel Photography

Before Sunshine

Photography by Brandy Angel Photography

After Sunshine

Photography by Brandy Angel Photography

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Photography by Brandy Angel Photography