At the age of 57, Florida resident Joy Perry received the role of a lifetime. She was cast in a Hallmark Christmas movie with NO previous acting experience! How does that happen? She answered an open casting call for a “funny, sharp, full of life female 55+ with or without acting experience.” The character also suffered from a nerve disease, and Joy fit that description, too.
Joy has a neuromuscular condition called Charcot-Marie-Tooth (CMT). Known as the most common disease people have never heard of, CMT affects one out of 2,500 people and is untreatable and incurable. It impacts the extremities first. Nerves die causing muscle to waste away.
Joy spent 3 weeks in Utah filming her part as Tess, mother to the main character, in The Christmas Bow. “Tess and I really are a lot alike,” she explained to Growing Bolder. “Both of us have a strong support system of family and friends, and both of us don’t let CMT hold us back.”
Despite her lack of strength and balance, Joy rides her mountain bike 100 miles every week. She is a passionate swimmer and completed a 3-mile ocean swim this summer. “I’m grateful my progression has been slow,” Joy told Growing Bolder, “but I can’t ignore the growing fatigue, cramping in my legs and hands, and increasing loss of balance.”
Joy’s sister, Adria helped with the movie audition process. She explained to Growing Bolder, “Rather than allowing her condition to limit her, Joy does as much as she can in the hopes that her strength and fitness will slow progression.” Adria thinks her sister is the perfect example of someone who continues to grow bolder. We could not agree more!
Joy tells her story in the Fall issue of Growing Bolder Magazine, coming soon!
For more information about the Neuropathy Foundation and Charcot-Marie-Tooth disease, visit www.hnf-cure.org