Official Kids Mag

Evan Lee, never meets a stranger. From the moment you see him, his bright smile, positive personality and bright green walker instantly draw you into conversation with him. Before you know it, you've made a new friend. Evan has served as an Ambassador for Arkansas Children's Northwest. His duties throughout the last several months have ranged from lowering the tallest beam in place on the construction site of ACNW last September to television appearances for the Give Kids a Miracle Telethon. He and his family, understand the importance of receiving care close to home. When Evan's mother Amanda was just 20 weeks into her pregnancy, physicians diagnosed Evan with Spina Bifida, a defect affecting the spinal column and Chiara Malformation, a structural defect of the skull that causes the brain to extend onto the spinal column. Once Evan was born, he was rushed to the Hospital for a life-saving surgery closing the hole in his back. For the first few years of his life, Evan would have multiple surgeries including a surgery to provide Evan with a trach and a feeding tube after he had trouble swallowing, one of the side effects caused by the Chiari Malformation. "Doctors weren't sure how spina bifida would affect him," said Amanda. "It was a waiting game to know what he would be able to do." Evan is an active little boy who walks, swims, loves to fish, canoe, plays baseball for the Miracle League in Springdale and plays with his friends at recess. Despite what many people would view as setbacks, Evan's positive attitude doesn't let any obstacle stand in his way. "He sees something he wants to accomplish, he takes the initiative and he conquers the goal," says Amanda. "Evan doesn't have bad days." Special to Official Kids Mag "The greatest challenge and the greatest blessing in my life." That's how Megan Meredith of Bella Vista describes her son, Jax, who is a patient at Arkansas Children's. An early ultrasound revealed that Jax had a cleft lip and palate. Megan's physician immediately referred her to the cleft and craniofacial specialist. "With a full team of specialists, Jax sees his surgeon, an audiologist, a speech therapist, a plastic surgeon and an orthodontist every six to nine months to check up on everything," Megan said. "We also saw a nutritionist when Jax was a newborn, because eating was very difficult." The team's supportive, family-centered approach to care eased the difficult experience in those early days – and over the last six years. "Over the years, it has felt as though they held hands and linked arms with us, supporting us, educating us, caring for us and giving us a level of expert care that is unrivaled," Megan said. "Because the team sees Jax so often, they feel more like extended family than clinical doctors." With his love of learning and tender-yet- lionhearted nature, Jax is well suited to meeting challenges. His current interests include karate, hiking, running, exploring, riding bikes, building with Legos and playing with friends. When he grows up, Jax envisions a career in the army, exploring space as an astronaut, and "driving race cars on the side," said Megan. No bad days Kid ambassador leads by example Special to Official Kids Mag • Photos by Beth Hall 'The greatest blessing' Boy with lionhearted nature overcomes adversity Kid heroes come in all kinds Evan Jax Off icialKidsMag.com • MAY & JUNE 2018 • 41

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