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Meet the New Face of Cerebral Palsy Care in Delaware

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Hollywood stars don’t usually walk red carpets at Wilmington parties. Micah Fowler didn’t walk, either. He rolled. Fowler, who plays the title character in ABC’s “Speechless,” has cerebral palsy. He is bound by his wheelchair—but not much else.

The 20-year-old has appeared on “Blue’s Clues,” “Sesame Street” and in the feature film “Labor Day.” Before all of that, when he was living in his native New Jersey, Fowler received treatment at Nemours/Alfred I. duPont Hospital for Children. In June, Fowler made a triumphant return as the guest of honor at A Night at Nemours, a black-tie fundraiser for the hospital’s Cerebral Palsy Center.

The gala also marked the red-carpet debut of Dr. Wade Shrader, Nemours’ new division chief of cerebral palsy. Shrader took command in February following the retirement of the center’s founder, Dr. Freeman Miller, an international pioneer in cerebral palsy care and one of Shrader’s mentors. “Nemours is the Disneyland for CP care,” Shrader says. “Dr. Miller has done a great job of building resources, and it’s my job to be a good steward of that and improve it.”

But Shrader’s goal isn’t just to treat patients—it’s to give them hope and reframe what it means to live with cerebral palsy. Fowler, a busy actor, is the perfect example of that. But Shrader doesn’t need to watch a TV family for inspiration. He finds it in his own.

 

Dr. Wade Schrader displays a picture of his wife, Carol, and son Benjamin. Benjamin and his brother, Mason, both have cerebral palsy.// Photo by Joe Del Tufo

 

Benjamin and Mason, two of Shrader’s four children, have cerebral palsy. Although they don’t have intellectual disabilities, both have mobility disorders and need wheelchairs. That hasn’t stopped them from attending college and maintaining GPAs that almost touch 4.0. Benjamin majors in political science and theater. Mason is getting degrees in anthropology and archaeology. He went on a dig in the Yucatan last year and he’ll soon do another in Spain. They’d be high achieving for any young men. For people with physical disabilities, they are astounding. There’s no doubt about it; Benjamin and Mason are cerebral palsy rock stars. “We would’ve given anything to have role models when the boys were 5 years old,” Shrader says. “Even to know that someone with CP could go to college would’ve been amazing.”

But the boys’ future seemed very uncertain 21 years ago. In 1997, Shrader’s wife, Carol, gave birth to triplets. Benjamin, Mason and their sister Claire were born early, at 28 ½ weeks. They spent two months in the neonatal intensive care unit and underwent a battery of tests. No alarm bells went off; all signs pointed towards typical development. Indeed, Claire had no problem crawling, pulling herself upright and preparing to walk. Claire doesn’t have any physical or intellectual disabilities, nor does Cate, the triplets’ now 12-year-old sister.

The Shrader boys had different paths in store. Mason struggled to stand on his own. Benjamin never would. When they turned 1, the boys were diagnosed with cerebral palsy. “It was devastating,” Shrader remembers. “We went through different stages of grief and worry. You have hope for the future, but you don’t know what’s possible.” Then again, the possible isn’t terribly interesting to Shrader. The impossible is what captivates him.

 

“At NASA, my work was closely linked to the human space program. But I felt that medicine was the most direct way to use my background to impact people’s lives.” -Dr. Wade Shrader​

 

Shrader shoots for the stars, literally. His first career was as a NASA engineer. He worked on the Atlas I rocket launch, Mars missions and space shuttle replacements. After budget cutbacks grounded or scrubbed many of the programs to which Shrader was assigned, he looked for other ways to deploy his scientific know-how. “At NASA, my work was closely linked to the human space program,” Shrader explains. “But I felt that medicine was the most direct way to use my background to impact people’s lives.” When the triplets were born, Shrader was in his second year at the University of Chicago’s Pritzker School of Medicine. After their diagnosis, he decided to pursue pediatric orthopedics and specialize in cerebral palsy.

Meanwhile, Carol was on her own journey, learning to be a special needs mom. “When the boys were toddlers, they had an occupational therapist and I learned as much from her as they did,” Carol remembers. “We sat in therapy week after week. Finally, I asked, ‘When do we teach them to crawl and walk?’ She held my hand and told me that they may never walk. ‘Maybe they’ll reach this goal, then maybe another goal,’ she said. She cried with me, laughed with me and taught me.”

Even back then, Shrader and his wife refused to place limitations on their children. Carol remembers finding a newspaper article about a woman with cerebral palsy who became a doctor. “I carried that article with me for years,” Carol says. “It was proof that some people with CP can do great things.”

Throughout his sons’ childhoods, Shrader oversaw their medical care, which included tendon transfers, tendon releases, spinal fusion, Botox injections, physical therapy and almost every other medical treatment available. If that sounds like a lot … It was. And that represents the biggest change in cerebral palsy medicine, Shrader explains. “There has been an evolution, not in technology or surgical intervention, but in attitude about caring for CP kids,” he says. “In the 1970s and 1980s, people were thinking that we can’t cure these kids, so why should we subject them to unnecessary procedures? Now, we’re thinking about quality of life as they advance into adulthood. We can’t cure them, but we can prevent some problems, like constrictive lung disease and pain from hip displacements.”

 

Dr. Wade Shrader spent years modeling the care he gave cerebral palsy patients around the country on that of Nemours/Alfred I. Dupont Hospital for Children. Now he heads that program, and is using his experience as the father of two boys with cerebral palsy to inform the care he provides.//Photo by Joe Del Tufo

 

Over time, the boys—and their sisters—began to thrive, so much so that Mason decided that other cerebral palsy families should know about them. “When the triplets were 11, Mason made a blog and said I needed to share our story, telling the good, bad and ugly,” Carol says. “It wouldn’t necessarily be the same thing for other people, but we plowed our way and here’s what it looks like.”

That blog, The Blessing Counter, launched Carol’s career as a cerebral palsy advocate. Now, she travels around the world speaking to medical professionals and caregivers. Her message is one of inspiration; she uses her kids as examples of what’s possible.

The same inspiration drives Shrader’s medical career, which has taken him to Texas Scottish Rite Hospital for Children, Phoenix Children’s Hospital and University of Mississippi Medical Center. In all three places, Shrader created cerebral palsy programs from scratch. “CP care was almost nonexistent,” Shrader says. “We have some of the best medicine on the planet, but it doesn’t get out to everyone.”

Why is cerebral palsy care so sparse? “CP is mostly a lower socio-economic disease,” Shrader explains. “The number-one cause of it is prematurity and the number one cause of prematurity is lack of prenatal care. Some counties in Mississippi don’t even have primary care doctors. Some homes in Arizona don’t have running water. Prenatal care is not at the top of their lists.”

 

“You go outside the walls of Nemours and drive 100 miles in any direction and people don’t know much about CP. We need to change that.” -Dr. Wade Shrader

 

Wherever he went, Nemours’ Cerebral Palsy Center was the gold standard that Shrader tried to emulate. “I tried to take a little bit of Nemours and plant it in Arizona and Mississippi,” Shrader says. That’s still his goal. But sharing Nemours’ medical technology is only one part of his plan. “The missing pieces are the levels of care that other families grapple with,” he says.

To fill those needs, Shrader plans to expand Nemours’ educational, support and outreach programs to parents, patients and healthcare professionals who work with cerebral palsy patients, their families and healthcare providers. “You go outside the walls of Nemours and drive 100 miles in any direction and people don’t know much about CP,” Shrader says. “We need to change that.”

But 100 miles is too small of a radius for someone who, not surprisingly, thinks globally. He and Carol—and Mason and Benjamin—have already taken their mission on the road, speaking at international conferences and engaging with the world’s top medical minds.

Still, Shrader says that his top priority is working with Nemours’ patients, all of whom he considers stars. He’s rolling out red carpets for each of them. Every time he enters a hospital or therapy room, Shrader walks in as a doctor, an advocate and—perhaps most importantly—a dad. “A special needs dad,” he clarifies.

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