'Never Give Up': How a 12-Year-Old with Arthrogryposis Found Her Determination

For most children, milestones like walking or writing come naturally. However, for 12-year-old Evelyn, these accomplishments have been extraordinary victories.

Evelyn was 6 weeks old when she was diagnosed with arthrogryposis multiplex congenita (AMC) with amyoplasia and chromosomal anomalies.

Infants with amyoplasia have dense fibrous tissue and fat instead of muscle. This leads to a loss of muscle development, poor range of motion and deformity in most joints. For Evelyn, this condition left her arms and legs straight and stiff.

Evelyn and her family live in Springfield, Missouri, where specialized care for AMC is limited. As Evelyn began treatment at another medical facility, her parents also found their high-deductible insurance plan posed additional barriers. Even the most basic care for her condition, like the cost of an orthotic, was difficult to afford.

Her father, Richard, began working nights and weekends to cover her medical expenses, but it was never enough. That’s when a coworker told him about Shriners Children’s. Evelyn was just 2 years old when they first came to Shriners Children’s St. Louis, and everything changed. “We were drowning in medical bills, and Shriners has done a wonderful job of helping us keep afloat,” said Richard.

Evelyn’s parents were finally able to focus on her health, rather than the financial strain of her care, all thanks to the Shriners Children’s commitment to never let a family's ability to pay or insurance status compromise the care a child needs.

Today, Evelyn is cared for by Perry Schoenecker, M.D., Lindley Wall, M.D., and Charles Goldfarb, M.D., specialists in complex pediatric orthopedic conditions.

“They help you to be the best version of you,” Evelyn said with a smile.

Since first coming to Shriners Children’s, Evelyn has undergone six surgeries to improve the mobility in her arms and legs. Each procedure was carefully planned to maximize her independence and support her growth.

“For a parent, when they’re being honest with you, that helps a lot in deciding whether or not it’s a surgery I want to put my kid through,” said Richard. “That honesty, combined with compassion, made all the difference.”

Thanks to her care team and her unstoppable determination, Evelyn is thriving in ways her parents never thought possible. “She’s really blossomed into a new child,” Richard said. “We never would have dreamed that she would come this far.”

Evelyn is an active member of her local Cub Scout troop, a cheerleader at her elementary school, and has big dreams of becoming an actress. She has also adapted to challenges with her own creativity.

“She has to use both of her hands to write, but her teachers are amazed at her handwriting,” said Richard. “She even has better handwriting than most of the kids at her school.”

Next up on her list of goals: learning to ride a bicycle. It may be more difficult without the ability to spread her arms for balance, but Evelyn’s determination and adaptability leave no doubt she’s up to the challenge.

Through every obstacle, Evelyn has shown the power of perseverance. Her journey is proof that with the right care and support, kids can do amazing things.

Her advice for others facing challenges? “You should never give up.”