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Missouri teenager to run first race after surgery

May 11, 2018 GMT

JOPLIN, Mo. (AP) — Mikayla Fauss had lived nearly all of her 14 years feeling burdened by cerebral palsy. It was a weight on her, impeding her movement and preventing her from doing what she most wanted to do: run.

But an apparently successful and life-changing surgery in December has relieved much of the spasticity in her body’s lower half, allowing her to chase her dream in her very first race during the Joplin Memorial Run later this month.

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“I’m looking forward to running and crashing the finish line with free legs,” she told The Joplin Globe .

Mikayla, who lives in Joplin with her parents and younger sister, was diagnosed at age 2 with a mild form of cerebral palsy, a neurological disorder caused by non-progressive brain malformation or injury that primarily affects body movement and muscle coordination. In her case, that meant her motions, including walking, were “very spastic and rigid,” coupled with frequent falls because of issues with balance, said her father, Ron Fauss.

Strangely, that diagnosis was rescinded while Mikayla was still a child, and her parents were told by doctors that they didn’t know what was causing Mikayla’s health issues. In the meantime, Mikayla developed a growth-hormone deficiency that led to scoliosis.

Her parents were desperate for answers, so at age 11, Mikayla had her blood drawn for a genetics test. The results showed that she tested positive for MEN 2A, a gene that increases the likelihood of developing cancer within the endocrine system. Worse still, her father and her younger sister, Melinda, also tested positive for the gene. All three, as of yet cancer-free, had a thyroidectomy within weeks.

One health crisis was averted, but there was still the question of treatment for Mikayla’s cerebral palsy, for which she had received another diagnosis just a year or two ago. Refusing to give up, her mother, Kay Fauss, a nursing instructor at Missouri Southern State University, searched the internet for options. The search led the family to physician T.S. Park, of St. Louis Children’s Hospital, and the surgery for which he is known: the selective dorsal rhizotomy.

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The selective dorsal rhizotomy surgery, offered as a treatment to spasticity caused by cerebral palsy, was somewhat controversial when it first debuted, although Park has become renowned in his field for pioneering a less invasive version of it in 1991. It involves cutting some of the sensory nerve fibers that come from the muscles and enter the spinal cord. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, thus reducing spasticity, St. Louis Children’s Hospital officials say in informational material available on their website.

The procedure has made Park famous worldwide, as he has performed more than 3,600 surgeries on children and adults from 72 countries. Although paralysis of the legs and bladder, impotence and sensory loss are the most serious complications, Park reports no long-term complications of patients undergoing the surgery as early as 1987.

“His findings are absolutely fundamental and influential,” Ralph G. Dacey Jr., chairman of neurological surgery at Washington University, told that institution’s magazine in February 2011. “He is one of the few people in the world to have perfected the technical aspects of this procedure, and he has systematically studied its effectiveness and role in the overall treatment of cerebral palsy.”

Many of Park’s cases, particularly the international ones, have made headlines. A November 2015 story from Canadian media told the story of a 7-year-old boy with cerebral palsy whose family took him to St. Louis for the surgery, which wasn’t offered in Ontario. And Australian media outlets reported in December 2016 that a 4-year-old girl with cerebral palsy and her family were set to fly to St. Louis specifically so Park could perform the surgery on her after she failed to qualify for the same procedure in her home country.

Mikayla was ultimately cleared as a candidate for the surgery, which was completed just a few months ago. The only time she had gotten emotional about it was the night before it was scheduled, when her parents instructed her to remove her fingernail polish so that doctors could more accurately read the pulse oximeter that would be attached to her finger to monitor her heartbeat. Mikayla slammed her hands onto the table in protest, her father said, but she ultimately complied with the request.

“She’s always been a trooper,” he said. “It’s been a long road for her, but she’s been great.”

To maintain hope and encouragement during the surgery, Mikayla’s parents had T-shirts printed with “Walk With Mikayla” on the front alongside their favorite Bible verse from Isaiah: “But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

Kay Fauss said the family also relied on a broad network of support.

“We couldn’t have gotten through this without the Lord, our families and many friends, Children’s Miracle Network, Ronald McDonald House (in St. Louis), coworkers, physical therapists and, of course, Dr. Park and his team,” she said.

Just three days after the surgery, Mikayla tested her legs with a few steps around the room.

“How do you feel?” her mother asked.

“Free,” the daughter replied.

Mikayla would later say that she felt as though the surgery had lifted the weight off the lower half of her body.

“Before surgery, it was like having chains on your legs,” she said. “And when the surgery was done, it was like the chain came off your legs.”

Even before the surgery, Mikayla had dreamed of being able to run. She got her first shot at joining a track team last fall, when she was named the manager of the track team at Thomas Jefferson Independent Day School, where sister Melinda is a student and runner.

Her father said the team’s coach, Thomas Thorne, was “great” about getting Mikayla excited about track until his death last September. Melinda, 12, also offers strong encouragement to her big sister and her ability to run.

Since her surgery, running has not only become a reality for Mikayla but a requirement. It’s part of her post-op physical therapy routine, and she can typically cover a half-mile distance in about six minutes, her father said.

It hasn’t necessarily been easy. Because the muscles in Mikayla’s hips and thighs were so underdeveloped, she’s worked hard to retrain them all so that they function normally. She also works to strengthen her stamina — something that was so deficient, it made homeschooling the best option for her in recent years — and her core strength, not to mention lifting weights, Ron Fauss said.

“She’s just now well enough and built up her strength enough to start doing that type of thing,” he said.

Mikayla now has her sights set on the first race of her life — the 1-mile kids’ fun run offered as part of the Joplin Memorial Run in two weeks. She’ll run alongside her sister to the finish line, where like all participants, she’ll receive a medal for her efforts. Her runs during physical therapy sessions now double as training for her big race.

For the first time recently, Mikayla ran around the track on her own without cramping. Proudly, and with all the innocence of a beginning runner, she announced to her father that she had completed a whole mile, to which he gently replied she’d have to run a couple more laps to reach that distance.

No worries, though. It may be a chore for her body, which in many ways is still learning how to move without causing her pain, but running more laps is something she’ll happily do — simply because she is able to.

“My dream has always been to be a runner and to run track,” she said. “I want to be faster than everyone else.”

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Information from: The Joplin (Mo.) Globe, http://www.joplinglobe.com