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Inner strength buoys Myrtle Beach girl, 8, with incurable muscle disorder

Health

Building strength will be a persistent challenge for Addi Phillips, 8, who has a genetic condition that causes lack of muscle tone and weakness.

The words are written in washable marker with the characteristic unsteadiness of a child’s hand.
At first glance, the small, unpainted clay mound on Tidelands Health senior physical therapist Jennifer Lewis’ desk is little more than a rudimentary pen and pencil holder. Its base is jagged and uneven, and the decorative grooves carved into its sides are inconsistent in height and depth.
But it’s the simplicity of the piece that gives it so much charm and meaning. The holder was a gift to Lewis from Addison “Addi” Phillips, 8, who knows too well the importance of the advice she inscribed on its face.
Written in wobbly, lowercase green letters is the phrase, “don’t give up!” It’s an axiom that Addi is forced to live by every day as she battles an incurable muscle disorder.

A long history

For years, Lewis has helped Addi in her battle against congenital myopathy, a genetic condition that causes lack of muscle tone and weakness.
“She’s such a positive little girl,” says Lewis, who offers care at Tidelands Health Pediatric Rehabilitation Services at Azalea Lakes. “She uses humor to get through everything. I just love that about her.”

If not complex in its design, the pen holder Addi Phillips gave to Tidelands Health physical therapist is full of meaning.

If not complex in its design, the pen and pencil holder Addi Phillips crafted for Tidelands Health senior physical therapist Jennifer Lewis is full of meaning.

Addi’s mother, Seabrook Phillips, will never forget the day she and Addi’s father, Philip Phillips, learned their daughter’s diagnosis. It explained so many things – why Addi was slow to start sitting and standing as a baby, why she hadn’t walked until age 2 and why she simply couldn’t keep up with her peers as she got older.
“What hit us hard was in kindergarten when the PE teacher called me,” Seabrook Phillips says. “The teacher said, ‘Listen, something is going on with her. She’s unable to skip and run and play with the other kids.’”
When the family finally got a diagnosis, it was difficult news to swallow. Seabrook and Philip Phillips are both former collegiate athletes and had always assumed their children would have the chance to participate in sports.
Far more unsettling was the realization their beautiful little girl would be faced with the condition and all of its implications for the rest of her life.
“As parents, we want to fix things, but there is no magic pill,” Seabrook Phillips says. “Addi is just going to have to get stronger, and she will learn how to answer the questions. We sit and talk to her about what she has – we want her to be educated so she can answer those questions about why she can’t do things that other people can.”

A rocky journey

Lewis has been by the family’s side for much of its journey, not only as a physical therapist but also as someone Addi’s parents can rely upon to offer an unfiltered assessment of Addi’s progress and who shares a commitment to help Addi improve.
“Miss Jenn connects with Addi. She gets down on her level and is honest and open with Addison,” Seabrook Phillips says. “She gets children, and she tries to help me – not just as a therapist but she’s also a friend.”
Lewis says the focus of her work with Addi has been on building her strength to help counteract the symptoms of her condition and allow her to lead as normal a life as possible.

Addi is a big fan of yoga, one of the many ways she maintains and builds strength.

Addi is a big fan of yoga, one of the many ways she maintains and builds strength.

Addi is hyperflexible, Lewis says, which adds to the difficulties she faces.
“We always tell her she has super powers that she has to keep under control,” Lewis says. “She can move her body in ways that are like a gymnast, but she’s weak, too, so she has to do extra work to stay in one place – she has to actually be stronger to stabilize her body to stand and walk and do other activities.”
Despite physical therapy and the efforts of her parents, building Addi’s strength has always been a challenge. At times she made tremendous progress, but the congenital myopathy would always steal some of it back.
Last year, Addi privately related to Lewis she was being teased at school; Addi was always the last person to get up when her class sat together.
“I could tell Addi was kind of getting down on herself,” Lewis says. “So my goal was to make sure everything was focused on raising her up.”

Breakthrough

A breakthrough moment came when Lewis noticed a post on the Tidelands Health Facebook page highlighting the youth swim team at Tidelands HealthPoint Center for Health and Fitness, the region’s only medical fitness center.
She passed along the information to Seabrook Phillips, who thought it was a great idea and registered Addi. Life hasn’t been the same since.
“Through swimming, she has done amazing,” Seabrook Phillips says. “It has allowed her to exercise in a different way. She has improved dramatically with her strength.”

Addi's involvement with the swim team at Tidelands HealthPoint Center for Health and Fitness has proven a great way for her to gain strength.

Addi's involvement with the swim team at Tidelands HealthPoint Center for Health and Fitness has proven a great way for her to gain strength.

As much as possible, Seabrook and Philip Phillips take Addi swimming in the family’s neighborhood pool and encourage her to swim laps. And she remains part of the swim team at Tidelands HealthPoint, where her performance has continued to improve.
“I think it helps with the muscle disorder I have,” says Addi, a student at Burgess Elementary School in Myrtle Beach. “My legs get more powerful.”
Addi’s strength and balance have improved enough that she climbs stairs without relying on handrails, is much more active on the playground and can keep up with her parents on their nearly daily walks around the block.
“I makes me feel great that I can catch up with (my parents),” Addi says. “I sometimes run ahead of them.”
With so much improvement, Addi only visits with Lewis once a month these days, primarily to check in to make sure that she’s continuing to do well.

Addi is known for her humor and great attitude, despite the challenges she faces with her strength.

Addi is known for her humor and great attitude, despite the challenges she faces with her strength.

“She’s always leaving messages on the board for the other kids,” Lewis says. “Last visit she made a picture with a smiley face and a note that said, ‘If you’re having a good day, write a note on the board.’
“Things are hard for her, but she’s wanting everyone else to be happy. She’s just an awesome little girl. I see her at the end of the day, and I leave smiling.”
Addi, who has a quirky sense of humor and loves to make others laugh, says the physical therapy homework Lewis gives her can be difficult, but she’s grateful for the help – which is why she decided to make Lewis the pen holder.
“Miss Jenn really loves me, and I love her a lot,” Addi says. “I thought it would be a good gift.”

Road ahead

Even though her condition cannot be cured, Addi and her parents are optimistic for the future. She’s got plans to be a DJ when she grows up, following in the footsteps of “Marshmello,” her favorite artist.
“Addi’s parents are her biggest cheerleaders,” Lewis says. “All the work they do with her is truly why she is doing so well.”

Addi’s favorite Marshmello song is “Alone.” Its music video tells the story of a child bullied at school for being different until a classmate accidentally finds out about the student’s secret talents as a DJ and tells others. Buoyed by an ensuing outpouring of support, the student builds tremendous confidence and leads a rocking classroom dance party.
“I think Addi really relates to that song,” Seabrook Phillips says. “I’m so proud of her. We have a long road ahead of us, and we are going to have challenges. But we are going to remain focused and positive.”

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