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The Lifeline

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A Christmas Gift

Featured Photo from A Christmas Gift

An Oviedo woman’s journey with a neuromuscular disorder is worthy of a Hallmark movie, so she auditioned for one, and it premieres on November 8!

Sisters Joy Perry of Oviedo and Adria Clark of Winter Springs weren’t terribly close as kids. Joy was six years older, and the girls traveled in separate universes.

That changed as they grew older, though, and this year, Adria became her big sister’s biggest cheerleader as she helped Joy audition for a role in a Hallmark film called The Christmas Bow.

Joy, 57, decided to audition for a significant role in the TV movie as a character named Tess who struggles with a neuromuscular disorder called Charcot-Marie-Tooth disease (CMT), which causes nerve damage and muscle atrophy in the extremities. It was not a stretch for Joy. After decades of extreme athleticism, she was diagnosed with CMT, herself. She walks slowly now with what she calls “an odd gait.”

“Emotionally, I could relate to the character,” Joy says of her part. “Tess is trying not to let CMT hold her back.”

To audition for the role, Adria used an iPad to film her sister at Joy’s home, with the kitchen and hallway as their studio sets.
Joy did have one prior acting job on her résumé: a kindergarten production of, coincidentally, the classic Christmas story. She played Mary.

“My mom told me I elbowed Joseph out of the way and said, ‘I’m the blessed mother,’” Joy remembers.
Such is the nature of her sense of determination.

It was this past summer when Joy got a letter from the Hereditary Neuropathy Foundation asking women in their 50s and 60s with CMT to audition for the part.

“Acting experience is strongly preferred,” the letter read, “but amateurs will be considered.”

Joy was not only considered for the role, she beat out several other candidates, some of them working actresses in Los Angeles, says Maclain Nelson, the movie’s creative producer.

“She had a real light in her eye and a natural quality in an audition that you usually don’t find in an amateur actor,” says Maclain.

During the audition process, Joy was invited to take part, via Zoom, in a line reading with director Clare Niederpruem, who is Maclain’s wife. Clare wanted to be sure Joy could handle the pressure of getting direction.

“Joy reacted to the pressure very well,” says Maclain, adding that her “Italian spunk,” as he described it, was another asset.
The Christmas Bow is about a gifted violinist (played by real-life virtuosa Lucia Micarelli) whose musical career is cut short by an accident. She finds healing by reconnecting with a childhood friend, played by lead actor Michael Rady.

The movie shoot took place in the midst of the coronavirus pandemic, from August 3 to August 21, in various small towns throughout Utah.

Adria spent close to a week visiting her sister at the shoot and described the surreal experience of making a movie during a pandemic.

“Everyone on set – actors, set designers, directors, producers – all wore a mask,” Adria says. “When it was time to film the scene they would say, ‘masks off’ and ‘action!’ After they called ‘cut!’ they would say ‘masks on.’”

In her role as the lead actor’s CMT-stricken mother, Tess learns, with her son’s help, to transition from a wheelchair to a rolling walker. Joy’s experience as a physical therapist assistant helped her play the part convincingly.

Compared to some cases, Joy’s CMT has been relatively mild and slow to progress, possibly because she has been in such good physical shape all her life. She played all kinds of sports in school and she started running in college. Joy learned to swim at the age of 39 so she could take part in a triathlon.

It was in 2009 that Joy began noticing her once-muscular runner’s legs had begun to atrophy. Her primary physician was baffled. She was diagnosed with CMT the following year and constantly heard words like non-curable, non-treatable, and progressive.

“I was in a state of panic,” Joy says.

In the ensuing years, Joy has come to accept some – but not all – of CMT’s limitations. Her calves are thin and weak. Long walks are difficult, and she can no longer run. But Joy stays active. She lives on a lake and swims every chance she gets. She recently completed a three-mile swim in the ocean at Cocoa Beach, and she's an avid cyclist.

The Christmas Bow premiers at 9:00 p.m. on November 8 on the Hallmark Movies & Mysteries channel.

The movie is Joy’s chance to spread awareness about CMT, a relatively common affliction that is still little known among the public.

“On a more personal note, maybe it will encourage others to try to focus on what they can do rather than their limitations,” Joy says.

There was a roughly 50-year gap between Joy’s first acting role, when she ushered Joseph out of the way, and The Christmas Bow. Joy says she would love to act again...and a little sooner  this time.

If lucky enough to be offered another part, she says, “I would take it in a hot minute.”

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