Zyler Woodward, 11, confidently drives his motorized wheelchair into the future


Gainesville resident Zyler Woodward, a sixth grader at Gainesville Elementary School, rides a bus that's especially equipped to accommodate his motorized wheelchair. Luke Cooley, the bus driver (far left) "is super cool with Zyler," says Zyler’s mother, Holly Uchtman. Also shown helping Zyler on the bus Monday morning are his grandmothers, Linda Simpson Uchtman (center) and Nancy Loftis Steele.

Zyler and his mom took this selfie last week when they headed to Mountain Home, Arkansas, to enjoy dinner at a Mexican restaurant and see the movie "Kung Foo Panda 4." Though confined to a wheelchair because of Duchenne Muscular Dystrophy, Zyler is "full of spunk, has character like no other and is usually very happy," his mom said. She calls him "a light in many lives."

When he's able to use his hands, Zyler likes to draw pictures of Jesus, like this one.

Duchenne Muscular Dystrophy is a “wasting” disease that weakens all muscles in the body, including those in the heart and lungs. To aid Zyler when he needs help breathing, a “puff-and-go” ventilator was recently attached to his motorized wheelchair.

Holly Uchtman missed the doctor's first call. But she was at her home in Republic and answered the phone when her son's pediatrician called back at 6 p.m. on that summer day in 2015. What he said knocked the breath out of her.

"I was standing in my bedroom. I'll never forget falling to my knees. I was standing by my jewelry box, and I knocked it over and it spilled everywhere," Holly said last week from the Gainesville home where she now lives.

The physician told Holly that he and his medical colleagues suspected that her livewire son, Zyler, then 3, had Duchenne Muscular Dystrophy. 

"Okay," Holly answered. "What do we do? Do I need to pick up a prescription?"

Then, "with the most compassionate heart, the doctor told me, 'No, Holly. It's not like that,'" she recalled. "He told me it's a disease that wouldn't go away."

The doctor went on to gently describe what lay ahead for Zyler. That's when Holly fell to her knees.

That devastating moment was nine years ago. Since then, Holly has learned a lot about Duchenne Muscular Dystrophy – honestly, none of it is good – and she has become Zyler's most devoted caregiver and enthusiastic cheerleader. She leads his support team that includes his grandparents, Nancy Loftis Steel and her partner Kenny Pickett; Linda Simpson Uchtman and Ricky Uchtman; his older sister Whitley Curtis; his three brothers, Dalton, Dylan and Dakota Woodward; a dozen or more doctors, specialists and other healthcare professionals; and a large family of aunts, uncles and cousins. 

After nine years of watching her brave and determined son face everything the progressive, muscle-wasting disease has thrown at Zyler without ever complaining, Holly has become brave and determined too. Her knees have gotten stronger as Zyler's disease has rendered his own legs useless. Talking to Holly about Zyler and what lies ahead for him, one gets the feeling she is one strong mama who won't get knocked down again, no matter what the future holds.

 

'Something's wrong with him'

Everything seemed fine when Zyler was born April 20, 2012, in Springfield; he was a big, healthy-looking, 8-pound, 9-ounce baby boy. At the time, Holly was a district manager overseeing three Subway restaurants, and Zyler's dad, Matthew, was an over-the-road truckdriver. As the months passed, Zyler didn't reach the milestones other babies usually achieved at his age. 

"Zyler was slower at everything," Holly said. "He didn't really crawl until he was 18 months old; he rolled everywhere. He was still eating jarred baby food when he was 2."

She knew Zyler was progressing slower than her daughter Whitley had progressed three years before Zyler. Still, Holly and Matthew would get upset every time they visited Matthew's grandmother (Zyler's great-grandmother), the late Freda Loftis. "She would say, 'Something's wrong with him,' and me and Matt would get so mad. We'd say, 'There's nothing wrong with him!' We'd heard that sometimes boys develop later than girls, and we thought that's what was going on. But his grandma knew from the get-go that things weren't quite right."

Holly and Matt split up by the time Zyler was 2, and Holly became a single mother of Zyler and Whitley. A short time later, when Zyler was 3 and finally walking, he got into Holly's mother's purse one day when she was babysitting him and managed to open a bottle of prescription medicine. 

"He didn't swallow anything; he just licked one of the pills," Holly said. But his grandmother rushed Zyler to emergency room, and he spent a couple of days in the hospital. 

"They didn't pump his stomach or anything like that," she said. But when medical personnel ran routine tests, some worrisome results appeared in Zyler's bloodwork. Several things were "out of whack," Holly said. 

They were referred to the pediatrician's office. "He saw the high levels and ran tests," Holly said. "At first they thought Zyler had an infection in his bones. We went through several more testings, but all of them came back negative."

The doctor told her he was "getting together with a network of other doctors" and he would call her when they thought they had a diagnosis. That was the call, in the summer of 2015, that knocked Holly to her knees. Shortly after that, on July 6, 2015, a neurologist confirmed Zyler's Duchenne Muscular Dystrophy diagnosis. 

Between the pediatrician's phone call and the neurologist's official DMD diagnosis, Holly said, "I researched Duchenne Muscular Dystrophy online – and just made myself sick." 

The Muscular Dystrophy Association's website, MDA.org, describes Duchenne Muscular Dystrophy (DMD) as "a genetic disorder characterized by progressive muscle degeneration and weakness." It's linked to a human protein that "helps keep muscle cells intact." In DMD patients, that protein is altered and doesn't function properly. So the muscles gradually fail. Holly also uses the Parent Project Muscular Dystrophy website, parentprojectmd.org, as an excellent source of information. 

In Europe and North America, DMD affects "approximately 6 per 100,000 individuals," the website says, primarily boys. Usually, the first symptoms begin between ages 2 and 3 and include "difficulty jumping, running, and walking. . . . enlargement of the calves, a waddling gait" and "an inward curve of the spine," according to the website. 

Those DMD symptoms are hard enough for families to accept. But what comes next is even harder: The muscles in the DMD patient's heart and lungs weaken too, "which can eventually cause acute respiratory failure," the website says. 

Although Zyler had been slow to hit standard physical-activity milestones in his earliest months, Holly hadn't noticed any real "difficulty jumping, running, and walking" as he grew beyond toddlerhood. Now she thinks the symptoms were probably there, but she had no reason to look for them because Zyler was an active little boy. When she learned what the earliest symptoms were, though, she realized they had been there. 

Sometimes she looks back at that terrifying incident when Zyler, as a 3-year-old, got into his grandmother's prescription medicine and was taken to the emergency room. "Had he not gotten into my mom's purse, I probably would have had several more years of not knowing he was sick," she said. 

She wonders now whether that would have been a good thing or a bad thing.

After the diagnosis, Zyler continued going to daycare while Holly worked, and, for a little while, DMD "didn't really affect him much," she said. 

Now, it does.

 

Moving home

There is no cure for muscular dystrophy. When Zyler was diagnosed with the Duchenne type of the disease, no treatment existed except prednisone, a steroid medication that "helps keep our heart and lungs strong but makes the bones brittle," Holly said. "It helps in ways and is very destructive in ways." 

The side effect was enhanced because of the dosages prescribed for Zyler. "We did high-dose weekends where he had 100 milligrams per day," Holly said. 

When he was 4, Zyler was diagnosed with attention-deficit hyperactivity disorder (ADHD), which can cause learning and behavior problems. That too was blamed on the disease. “Duchenne not only affects the muscles, it affects the brain – how you comprehend, how you respond and react to things, your emotions," Holly said.

Zyler was 6 when he broke his first bone: his tibia. That bone in his shin broke when it was hit by a piggy bank, Holly said. Recovery was hard, but Zyler did walk again after that first break, she said. 

Then came several surgeries and more broken bones, including a crushed knee and a broken femur that was broken when he slid off a couch. "That's how brittle his bones are," Holly said, adding, "That was all before he was 9." 

By then, Zyler and Whitley were attending school in Republic. But Holly, who grew up here and graduated from Gainesville High School in 2002, longed to come home. So, last summer, they moved to Ozark County. Holly and Zyler live in Gainesville, near several relatives and friends who provide strong, love-filled support. Holly's mother, Linda Uchtman, who lives in Mountain Home, has been her "rock," Holly says. "I couldn't have gotten through this without her." Matthew's mother, Gainesville-area resident Nancy Loftis Steele, has also been a crucial supporter.

Holly's daughter Whitley, now 14, lives in Rockbridge with her dad and stepmother, Russell "Chub" and Kim Curtis. "She's the only child in that home, so she gets the one-on-one attention she needs," Holly said. "For many years, she had to help me care for Zyler, and that was hard on her. I think she's grieving in her own way for her brother because she's seen what he's been through."

 

Caring for Zyler

Holly no longer works outside the home. "Zyler is my full-time job," she said. 

Managing his medicine (15 pills a day) and helping him with his personal needs is a job in itself now that Zyler, as a growing adolescent, weighs 140 pounds – about the same as Holly. She's grateful for a Hoya lift that helps her raise and lower him into his hospital bed or chair. 

A nurse comes to their home to do Zyler's Exondys51 infusions. Holly also takes him to Springfield for bone infusions. 

Another job is making sure all of Zyler's life-support machinery is in good working order, including the new breathing device added last week to his motorized wheelchair. The "puff-and-go vent" is connected to an onboard oxygen tank so that Zyler, in his wheelchair, can simply turn his head, put his mouth on the tube and get help breathing whenever he needs it. 

Zyler's equipment also includes a bi-pap machine, vest therapy device, cough-assist machine and a continuous pulse-ox monitor that sends his readings straight to a pulmonologist's office.  

In addition to that, Holly takes him to medical appointments in Springfield at least once a week, sometimes more, for scheduled visits to his two pulmonologists, cardiologist, orthopedic surgeon, neurologist, nutritionist and "a doctor who makes foot braces" – plus Zyler's favorite: the MDA clinic, where he gets to visit with other muscular dystrophy kids in the waiting room.  

The costs associated with Zyler's care are breathtaking, totaling about $1.5 million a year, she said. That far exceeds anything Holly and Zyler's dad could ever hope to pay without government assistance. For example, his motorized power chair cost $32,000, and the Exondys51 infusions cost $70,000 per week.

They are all thankful for Missouri Medicaid, which covers expenses for children with disabilities like Zyler's. 

 

Giving back

Now a sixth-grader at Gainesville Elementary, Zyler, who turns 12 in April, is a happy, confident young man who loves school, Jesus – and the Kansas City Chiefs. 

"He's a huge Chiefs fan," Holly said. 

With help from the Muscular Dystrophy Association (MDA) and the Alliance Rehab and Medical Supply Company in Springfield, he has been showered with Chiefs memorabilia, including a handwritten letter from Chiefs players. 

MDA, which raises money for research, awareness and patient assistance, has also helped Zyler in several other ways, Holly said. "He's gotten to do things through MDA that wouldn't have happened otherwise," she said. 

As he has grown, it's become important to Zyler to give back and to help others. There's not a lot kid can do when his legs don't work, his arms are weak and he sometimes struggles to breathe. But he and his mom have worked to give back to the organizations that have helped them and other muscular dystrophy patients.

Zyler was an MDA "local ambassador" in the Springfield area for two years before covid turned things upside-down, Holly said. He made eight MDA commercials for Springfield TV station KSPR, he attended fundraiser events where he accepted donated checks from big supporters like Price Cutter Grocery Stores. And he "went on motorcycle rides that raised money," she said. 

Holly and Zyler also attended MDA "festivals of hope," where Holly told Zyler's story. And they were part of a "Team Zyler" that participated in several MDA fundraiser walking events. 

Zyler and his family were "always very involved" in MDA events around Springfield and even in Joplin, Holly said. "But when covid hit, that certainly put a huge halt on everything."

She's grateful now for the support Zyler's local community has shown this month by making donations to "buy shamrocks" at Town & Country Supermarket to contribute to MDA during its annual fundraising drive. 

In addition to their work for MDA, Zyler and his family have been active in promoting one of the promising new drugs developed for Duchenne Muscular Dystrophy patients. 

Two years after he was diagnosed, the Federal Drug Administration approved the new medication, Exondys51. Alerted to the drug's development by Zyler's medical team, Holly eagerly awaited its official approval. "The whole year of 2016, I had a case worker with the company that makes Exondys51, and I called her every week to ask when it would be available," she said. 

Soon after the drug was released, Zyler's medical team placed a port in his chest so he could be regularly infused with the new medication. The manufacturer, Sarepta Therapeutics, invited Zyler and his mom to be spokespersons for the medication. 

As such, they have traveled to gatherings of hundreds of pharmaceutical representatives in Boston and Scottsdale, Arizona, where Holly told Zyler's story. And, impressively, as a 10-year-old, Zyler himself spoke at a large Chicago pharmaceutical conference. Sitting in his manual wheelchair (he had just recently lost the ability to walk, Holly said), he spoke for about five minutes. "He was nervous, but he wrote it out himself and then read it," she said. 

Holly and Zyler's sister Whitley also spoke to the group. 

Exondys51 hasn't been a miracle drug that made a huge difference in Zyler's disease, but Holly believes it may have slowed the progression of the muscle-wasting degradation. "And for sure it hasn't hurt him," she said.  

 

Teachers with 'a genuine heart' for Zyler 

Zyler gets to and from Gainesville Elementary School on a school bus that's equipped to accommodate his motorized wheelchair. Luke Cooley is the bus driver, and Zyler is the only passenger. "And he's okay with that," Holly said. "Luke is super cool with him, and the school has been phenomenal. They don't want him to feel left out. They either have a scribe for him or he uses a talk-to-text computer." His Gainesville teachers "have a genuine heart for him," she said. "They're so personable and loving."

Zyler's favorite subject is math, and he also loves doing science projects, Holly said. 

"He loves school, but it's hard for him to focus. He reads well, and he's very intelligent, but he doesn't retain information, and it's sometimes hard for him to comprehend certain things," she said. "I say that, and then I have to add that he hears everything, and there's so much stuff he doesn't forget. He'll tell you the oddest things you said two years ago!"

 She appreciates the accommodations the school has made for Zyler, and she is especially grateful for the understanding the school's faculty and staff have shown. Even though he loves school, his classtime has gradually shortened "because he gets tired and worn out," she said. "By the afternoon, he can barely lift his hands to turn in a paper."

 

'Anticipated grief' 

Despite all the setbacks and challenges, Zyler keeps going, even as each day presents new challenges, and even as he accepts that harder days lie ahead. 

"He knows that things will be different. He knows he'll be on a breathing machine someday. He knows his hands won't work sometime soon. He knows he'll never drive," Holly said. 

Still, he never complains, she said. "Even when he quit walking, he was disappointed, but he accepted it." 

The closest Zyler comes to complaining is a question he occasionally asks. "Sometimes he says, 'Why did God do this to me?'" Holly said.  

She tells him, "You never know what God has in store for you," and she reminds him of their work with MDA and the drug manufacturer, when they've traveled far and wide to inspire and encourage other muscular dystrophy families. She also points to the money they've helped raise for MDA and how it funds research and provides much-needed assistance. 

She tells him, "God is using you to benefit somebody, or kids like you." 

Zyler's work to benefit others is harder now, though, because covid threw all those previous activities off track – and because Zyler's disabilities have worsened. 

Since his diagnosis in 2017, Holly has lived in what she calls “anticipated grief” as she thinks about the future. A couple of months ago, that grief shot forward as Zyler experienced a frightening episode of what Holly calls “chronic respiratory failure.” "We had quite a scare – an ambulance call," Holly said. 

The cause was Zyler's declining lung function, which is now about 50 percent of what it should be. "We're rapidly progressing," she said. 

Still, Zyler constantly looks to the future with confidence. Sometimes he muses, "I wonder what God has in store for me." And he asks his mom, "When do you think my benefits are going to come out?'"

Holly and Zyler attend the First Baptist Church in Gainesville, and she describes her son as "a godly person. He has faith, and he's a light in many lives."

Their faith comforts them and eases some of Holly's fears about the future. Zyler doesn't seem to have any fear about it at all, she says. Despite his circumstances, he faces the future with joy. It shows in the remarkable pictures Zyler draws – when his hands are working. "He draws pictures of crosses and pictures of Jesus," Holly said.

And then she added, "And pictures of where he's going."  

Ozark County Times

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