No Bad Days
Kid Ambassador Leads by Example
Special to Official Kids Mag * Photos by Beth Hall
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.”
‘The Greatest Blessing’
Boy With Lionhearted Nature Overcomes Adversity
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.
‘She’s Fixed and She’s Going Home’
Special to Official Kids Mag
Leigh Ann and Kenny Sandlin still vividly remember the sound of the helicopter lifting off and landing on the helipad each night of that week, six years ago, when they shared a room at Arkansas Children’s Hospital with their infant daughter, Kaylyn.
“After she’d finally fall asleep we would lay there listening to it take off and come back, over and over,” Leigh Ann recalled with wonder.
Kaylyn was just six weeks old when Leigh Ann took her to her pediatrician in Bentonville to find out why she was spitting up so much.
“I thought maybe she had acid reflux,” she said, “but as soon as we saw her under the clinic’s florescent lighting, it was very obvious that her skin tone was yellow. His tone was urgent. He wanted to check Kaylyn into their local hospital immediately. The baby’s bilurubin and liver enzyme counts were off the chart. A week later, no closer to a diagnosis, the family was referred to specialists.
Some of the most meaningful memories the Sandlins cherish from their experience are the small acts of compassion that felt huge in such a difficult time, like when Kaylyn, who was still breastfed, had to fast for upward of 8 hours.
“That was really hard on us,” Leigh Ann remembered. “She was screaming because she was so hungry, and was too little for us to explain why.”
When the Sandlins learned Kaylyn’s diagnosis, bilury artesia—an improperly formed liver–Leigh Ann remembers an intern who thoughtfully tore off a piece of paper and wrote it down for her, so she could begin to grasp what those frightening and unfamiliar words meant.
Kaylyn’s surgery was a success.
“Within a week we had gone from, ‘we have no idea what’s going on’ to ‘she’s fixed and she’s going home,’ said Leigh Ann. “Which is amazing to me. They’re really good at what they do.”