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September Calendar Kid: Staying strong

September 30, 2019

When asked what he’d like people to know about him, Austin Clayton’s response leaves no doubt about his positive outlook: “I can go pretty fast in this thing, really fast,” he points out, referring to his self-propelled wheelchair which he’s sometimes issued speeding tickets for in school.

Since he figures people will wonder why he’s in his chair, he’s open to sharing this too: “I have limb-girdle muscular dystrophy. That’s why. And I want to be treated like anyone else.”

How Austin has adapted – and not let this get in the way of his life – is one of many ways we don’t think he’s quite like anyone else. He’s tougher, and has proven this with life experiences that have brought out his next-level resourcefulness and determination. And though he’s not yet a teenager (he turns 13 in December), he’s found his way of doing some pretty great things in the world already.

Stopping muscle breakdown

Just over three years ago, Austin came to us for inpatient care for muscle issues. Earlier that year, his parents noticed their active, sports-loving middle child was falling down more than usual and not able to catch himself. During his stay, they began working with child neurologist Dr. Amy Harper who started testing to figure out what was going on. Four months later, his diagnosis was genetically confirmed.

“It’s pretty rare, his subtype,” Austin’s mom, Michelle, remarks, “but Dr. Harper found it quickly. We are lucky to have her.”

Muscular dystrophy is caused when information in the genes is missing or incorrect and affects the production of the proteins a body needs for healthy muscles. Muscles break down and become weaker over time. “The muscle breaks down because a protein is missing,” is how Austin explains it. “The more active you are, the more muscle breaks down.”

The muscles most affected by Austin’s form of MD are around the hips and shoulders. They are connected to the bony structures in those areas which are called limb girdles. Treatment focuses on physical symptoms and can include medication, therapy and assistive equipment to keep muscles as strong as possible for as long as possible. Monitoring organs like the lung and heart, which can also be affected, is also important.

Austin comes to our Muscular Dystrophy Association Care Center for team appointments every six months.  It’s one of 150 centers in the U.S. that help advance care and research related to MD. At these appointments, Austin sees all the specialists he needs for his diagnosis – cardiology, pulmonology, neurology and physical therapy. Medical equipment vendors who can make adjustments and repairs to his wheelchair and an education specialist who makes sure his needs are met in the school setting are there as well. This coordinated care is one of the things Michelle, a public health nurse, considers critical for Austin.

Another is our research connection. Dr. Nicholas Johnson, a neurologist who works with patients at both CHoR and VCU, leads the GRASP-LGMD consortium, which is a collection of 12 international centers dedicated to preparing patients with limb-girdle muscular dystrophy for upcoming clinical trials. Because of this, the coordinating center is here in Richmond and already preparing so our patients can be ready as soon as trials for new treatments begin. “It is in advance of the rapid development in gene replacement therapies that we expect to impact limb-girdle muscular dystrophy over the next few years,” Dr. Johnson explains.

Dr. Johnson expects to be able to enroll Austin in studies this fall. Knowing what research in gene therapy could mean for himself and so many others, Austin’s been doing his part to support these efforts. This summer, he and his parents joined nearly 100 families from around the country in Washington, D.C. to visit with lawmakers as part of Children’s Hospital Association’s Family Advocacy Day. Austin and his parents met with three congressional offices where he shared his personal story and a plea for funding research.

I am constantly astounded by his courage and drive,” physical therapist Alexa Shulleeta, who has worked closely with Austin through the years, remarks. Knowing how hard kids like Austin work every day, and in so many ways, inspires us even more to research, find cures and continue to do everything we can to advance medical care.

Preserving strength

For now, Austin’s treatment centers on weekly physical therapy sessions at our Fredericksburg Therapy Center. With his condition, the muscles closest to the body tend to weaken first so most of the exercises Austin does now in therapy focus on maintaining his current level of strength in his core and hips. “This can help with being independently mobile for as long as possible,” Alexa explains.

His therapists also work on finding ways for Austin to move that require less energy from his muscles to help preserve them from breaking down and equipment that can help with this and make daily life easier. Therapy itself is a complicated balancing act. It can be a fine line between helping maintain strength without overexerting muscles, which could be harmful. “It puts a high emphasis on the child to learn their own limits and be able to communicate when they need a break,” Alexa explains. This is something, both in therapy and life, Austin has needed to learn to recognize and help manage. “Now he does a great job of advocating for himself,” Alexa praises.

A warm-up on a stationary bike or a scooter typically starts his sessions. This is followed by stretching, then balance and strengthening activities. Austin does several activities while in a full or half kneel, a difficult but helpful position for overall core and hip stability and strength. To work on balance, he stands on a balance training device or keeps his feet in a specific position while they toss a ball. Therapy is challenging physically, but Austin is up for it. “I like the way they’re able to turn everything into a game,” he remarks.

Heroes honor

Though Austin’s parents have noticed some additional weakness – “It is a progressive disease,” Michelle acknowledges – through hard work, learning when to stop and his willingness to use assistive equipment, she says he’s been able to remain “relatively stable.”

Austin uses his wheelchair about 75 percent of the time when outside the house. Preserving his muscles is one reason, but his dad, Tony, says it’s also for muscle fatigue and worry that his muscles won’t always work well when needed: “The fatigue means his muscles will give out and he falls. He doesn’t want to push boundaries when he’s in school, or fall when he’s holding something like a lunch tray, so he uses the chair.”

This is one of many ways Austin has adapted his life to maintain as much function as he can. But he refuses to let a great life pass him by.

He hasn’t stopped attending camps, trying activities like surfing or participating in outdoor adventures, and he hopes to try adaptive sports soon. He has a strong circle of friends who see him, not his wheelchair. “They treat him as a normal 12-year-old,” Michelle says gratefully.

In his middle school, Austin’s known for being a speed demon in the hallways, doing skateboarding-like moves in his wheelchair, and being a smart and involved student who loves math. He’s on his school’s debate team, a percussionist in their concert band, and part of the Math 24 Club where students race to combine four numbers to get to 24 (he can complete these in just seconds). He also makes time to tutor two sixth-grade percussion students and cook dinner about twice a week for his busy family. Chicken Parmesan is his specialty and he does every step – frying, baking and making pasta.

One of Austin’s biggest dreams has always been to become a Marine like his dad. Last year, his uncle, also a Marine, set up a Marine-for-a-Day experience for Austin at Camp Lejeune. “Austin had a smile in every photo,” Tony recalls, “and I probably took 100 that day.”

He rode in a Humvee, visited the armory and spent time getting to know his uncle’s fellow Marines. At the end of the day, they held a formation and gave him a citation as an honorary Marine, one of the only items he’s ever pinned to his bedroom wall. Then, several of the Marines who had gotten to know Austin that day took the rank patches off their collars and presented these to him – a symbolic gesture and sign of respect for the strength he shows in life.

“Regardless of what challenges Austin faces, he looks at it with a positive attitude; it’s just who he is,” Tony says, reflecting on this touching moment and on the past few years. “Seeing him remain so positive and stay optimistic is inspiring.”

“He takes on every challenge,” Michelle adds about Austin’s unbreakable approach to life, “and gets right back up again if he falls.”

In Austin’s world there are no falls or fails, there’s only promise for a young man who takes on new challenges without reservation. From dancing at MDA camp to advocacy in D.C., Austin has it all and does it with style! Per Dr. Harper, “Austin is always positive and sporting a new look. He is one of the coolest kids I know.”

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