Official Kids Mag

By Suzanne Rhodes Official Kids Mag He plays baseball, excels in math, has many friends, and enjoys playing with Sophie, his dog, and Rosie, his cat. Nicholas E., a sixth-grader at Holt Middle School in Fayetteville, is just like any other 12-year-old boy—except that he has a rare disease called arthrogryposis multiplex congenita (AMC) that causes loss of movement in various joints of the body. Nicholas is wheelchair-bound. He has a caring spirit and courage despite hardships, and that's why we chose him as our February Kid Hero. His mom, Melissa, said her son was born with "a joint contracture condition." Contracture means curving of joints. It affects people differently. Some have arms that can't bend at the elbow. Nicholas' left arm is bent, or "flexed," and can't fully straighten out. Neither can his legs. "It presents physical challenges," Melissa noted. "He's had 26 surgeries and lots of medical interventions." A couple of those surgeries were to place staples in his knees to help straighten his legs for better standing and walking. Of all the medical procedures, Nicolas said the knees hurt the most. He also has scoliosis, or curvature of the spine. When he was only two, he had an operation to put a metal rod in his back. "They had to expand it every six months surgically to keep up with his growth," Melissa said. "If he hadn't had the rod, he probably wouldn't be here right now. He was really crunched. His lungs wouldn't have had much of a chance to grow enough to support his body. It's amazing all the things they can orthopedically do to help people." Orthopedics is a branch of medicine related to the muscles and skeleton. Fortunately, about four years ago, a new rod was developed that could be lengthened magnetically, and Nicholas had surgery to have one implanted. It's called the MAGEC (MAGnetic Expansion Control) Spinal Growing Rod. "We go to Arkansas Children's Hospital in Little Rock every three or four months but he doesn't have to have surgery for it, so that's nice," Melissa explained. The doctor uses a remote control outside of the body to lengthen the rod as Nicholas grows. "I take therapy—physical, occupational, speech," Nicholas said. "When I do physical therapy, sometimes I get on my gait trainer and I can walk." The gait trainer is an assistive device that gives him support to help him walk. He also uses a treadmill for walking. For these activities he wears long leg braces. For his condition of club feet, he's had full casts, called serial casts, on his legs. He wears them every week for a series of three or so months to help correct his feet and put them in better position for walking. "Growth spurts tend to undo this work, so it takes a lot of stretching and casting to keep them in good alignment," said Melissa. The goal is for her son to become more and more independent, but his mom said there's a fine line between him having to go through so many tough medical interventions and also wanting to see change. "He's fantastic just the way he is." Nicholas admits that he worries a lot. Loud, startling sounds like fire drills at Not so different at all Nicholas' rare disease limits motion but not the kindness of his heart "He's fantastic just the way he is." ~ Nicholas e.'s mom, Melissa 38 • FeBruary 2021 • officialKidsMag.com

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