CONDITION: ARTHROGRYPOSIS MULTIPLEX CONGENITA (AMC)
LOCATION: SHRINERS HOSPITALS FOR CHILDREN — GREENVILLE
From the time Taylor was diagnosed with arthrogryposis multiplex congenita (AMC) in utero until she was 8, her family never knew that treating the rare condition was an option. Doctors regularly told them that Taylor, now 9, would never live an independent life, as AMC causes a lack of muscle development along with stiffness and malformation in more than one joint of the body – and Taylor’s case was severe. With almost no mobility in her arms and legs, Taylor had never set foot out of her power chair – until recently.
Taylor’s mom, Rachel, learned of Lauren Hyer, M.D., at Shriners Hospitals for Children — Greenville through a Facebook support group. Rachel said the experience has been “absolutely life-changing.”
After rounds of intensive therapy and bracing to help get her moving, Taylor’s team of doctors and physical and occupational therapists gathered with the family to discuss what they believed to be the best path forward: amputating Taylor’s most severely damaged leg.
During that meeting, Taylor made her decision. “Ultimately, Taylor was the one who decided to move forward with the amputation,” said Rachel. “Today, she couldn’t be more excited about the outcome: a custom-made prosthetic wrapped in unicorns.”
Taylor recently took her very first steps – and she doesn’t plan on stopping there. She intends to do the things she’s always dreamed of, like riding a bike and heading outdoors all by herself, skateboard in hand.