Arthrogryposis Patient’s Care Spans Departments, Locations – And Her Lifetime
It is 2010, and a dark-haired baby girl wearing a brown onesie with colorful hearts and a white bow in her hair lies on the examination table.
Both legs are in casts, and her tiny hands and wrists are braced.
In 2026, that same girl stands next to her car, neatly dressed in the uniform of the popular fast-food restaurant where she works. Her hair is a shade lighter now, and she beams with self-confidence.
The 16 years in between hold the inspiring story of Sadie’s journey with arthrogryposis multiplex congenita (AMC) and the life-changing care she received at Shriners Children’s Philadelphia and Shriners Children’s Greenville.
AMC patients experience mobility difficulties with some or many joints “frozen” in straight or bent positions. Hands, wrists, elbows, shoulders, hips, knees and feet may all or partly be affected, accompanied by muscle weakness.
For Sadie, surgical intervention as well as physical therapy and occupational therapy to maximize motion took place at both hospitals. Over the past decade and a half, Sadie has also benefited from custom-made braces created by Shriners Children’s Pediatric Orthotic and Prosthetic Services (POPS) team. However, the family’s connection to the system began even earlier.
Showing her improved function, Sadie rides a scooter as a young girl.
“Being told your child has a special medical condition is the scariest and absolute worst moment in a parent’s life,” said Jessi, Sadie’s mom.
Thanks to Shriners Children’s Greenville’s prenatal education program, the new parents’ first appointment with a pediatric orthopedic surgeon was prior to Sadie’s birth.
“It gave us comfort to learn about AMC and what my daughter would need as she grew,” she said. “It helped our family be prepared.”
With knowledge and a care plan in place that grew along with Sadie, not only her physical needs were met. The hospital’s weeklong Activities of Daily Living (ADL) Camp helped Sadie increase her ability to master essential daily skills such as dressing, eating, personal hygiene and mobility.
“It’s cool because we can teach each other things we’ve figured out ourselves to do easier,” Sadie said. “It could be applying make-up or a better way to put your shoes on. We learn from each other.”
Meanwhile, the camp creates a powerful sense of community among children who rarely encounter others facing the same challenges presented by a rare condition like AMC.
For all she’s gained, Sadie has equally given back to the hospital. Making countless appearances to educate the public, potential patients and donors about the mission of Shriners Children’s Greenville, Sadie is considered one of the most prolific Patient Ambassadors in the local program’s history.
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