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Fund started for the love of Wesley

By Staff | Feb 11, 2015

Wesley Wayne is a lively, fun loving, cheerful three year old with dancing bright blue eyes and blonde hair. He is as curious and stubborn as any other three year old and has a contagious laugh and charming personality. Like other little boys his age, he likes mashed potatoes, hot fudge sundaes, Mickey Mouse Clubhouse, and watching videos of firetrucks on You Tube.

Unlike other three year olds though, Wesley can not run and play in the yard or at the park. He can’t pretend to mow the yard with his dad or follow his mom around the house picking up his toys. He can’t build a fort out of blankets in the living room nor chase the dog down the hallway. Shortly after he was born, Wesley was diagnosed with Cerebral Palsy Spasticity, a disorder that will negatively affect his muscles and joints for the rest of his life.

On May 28, 2011, Wesley entered the world by emergency C-Section at Ruby Memorial Hospital in Morgantown, W.Va. While in the Neonatal Intensive Care Unit there, doctors had an idea that something was wrong with the newborn, but did not know exactly what it was. He was about a year old when, after several series of tests, the full diagnosis of Cerebral Palsy Spasticity was determined.

From the beginning of his diagnosis, and even before, Wesley’s parents, Steven and Kathryn Wayne of Sistersville, have never looked back . . . doctor’s appointments, treatments, therapy, hospital visits, research, teaching, learning . . . whatever it has taken to help Wesley.

Though they recognize their son has special needs, the Waynes simply go about their now regular daily routines with him, doing their best to give him the most normal life they can. “We treat him like the next kid out there,” Kathryn said. “We don’t treat him like he’s going to break.”

“Everything he does every single day, even just rolling over in bed in the mornings, it’s considered therapy,” she said. “We make a game out of it, whatever it is, so he doesn’t get bored and doesn’t give up. As long as we make it fun, he will do whatever it is he needs to do.”

Many times they’ve had to be creative, because the therapy is so very important to the well being and progress of their child. Reaching for something, sitting up, laying down, clapping his hands-everything is therapy. “Even when he plays with his toys, it’s therapy,” Kathryn said. “It teaches him to use his motor skills with his arms, hands, and legs, and he’s very smart. He catches on to things pretty quickly.”

His voice is soft and quiet most of the time, but he does talk just like every other child. “He doesn’t say as much as he should for his age,” said Kathryn. “But he can count to 10 on his own and mocks any words you say, just like a little kid will do. We talk to him and tell him colors and pictures and such and he will mock us until he catches on and remembers it on his own.”

Like other little boys his age, he has his favorite episodes of certain television shows and movies and can recite the majority of them word for word right along with the show. He can also demand to watch certain shows from time to time, and does.

“He still has trouble chewing, so we still have to mash his food up, no matter what kind of food it is,” said his mother. “He really can’t eat candy because it’s a little difficult to mash up, but he loves anything chocolate. I would say his favorite thing is a hot fudge sundae. He goes nuts over them.”

Wesley is three years old now, meaning he is growing and his needs are progressing, and for the first time this past fall, he started spending time away from his parents-he entered Pre-K at Sistersville Elementary School. He goes to school on Wednesdays and Thursdays and seems to love it.

“He loves to be around everyone, and the teachers are amazing with him, more than I thought possible,” Kathryn said. “With him having cerebral palsy, I figured the kids in his class wouldn’t want anything to do with him because he can’t get around like they do. But was I wrong! The other kids in his class enjoy being around Wesley and they think his special needs chair is just the coolest.”

“I really love the fact that Wesley feels safe at school with the other kids around him. As for the teachers, at first I was afraid I would have problems with them, and again, I was wrong there. His teacher, Ms. Shriers, and the other two are amazing with him.

“At first, I went to class with him until he got used to being away from me, and the way everyone was with him . . . I wanted to cry because it made me so happy to see him so happy.”

“Wesley has his bad days too, where he gets overwhelmed with all his surroundings and he gets upset. But they don’t just call and tell me to come and get him because they can’t handle him. They actually console him and show him patience and kindness.”

On Wednesdays, Wesley sees a physical therapist at school. She works with his legs, teaching him to walk, to go from a laying position to a sitting, from standing to sitting, etc. The therapist also works with him with a “gate trainer” (a special needs walker) to assist him in walking right now, teaching him to move his legs the right way in order to step correctly. Wesley also wears Ankle Foot Orthosis leg braces (AFO’s), which is also helping him to learn to walk.

Like other three year old’s, Wesley is a happy, well adjusted, sometimes mischievous child. He is a student who loves school, has a Spider-Man back pack and he will tell you very clearly that his favorite color is blue.

Because of cerebral palsy, he has been determined as special needs. But like other parents of three years old all over the world, his mom and dad do not see him that way.

“He is our son and we want to do what we think is best for him,” his mother said. “He deserves the world and that’s what we want to give him-the world.”

With that thought in mind, they have contacted the Cerebral Palsy Clinic at St. Louis Children’s Hospital in Missouri and made an appointment for Wesley in June to see if he is a candidate for Selective Dorsal Rhizotomy (SDR) surgery that will help lessen the spasticity in his legs and possibly allow him to walk, crawl, or sit on his own. At the clinic, he will be evaluated by therapists and doctors to see if the surgery can possibly help him.

Because the West Virginia Medical Card will not cover the cost of the evaluation in St. Louis, the Waynes are trying to raise the money for the trip and appointment themselves.

The surgery itself, if in fact Wesley is a good candidate for it, will only add to their financial burden, but they have to know.

“We just want people to know that no matter the outcome of any of this, Wesley is our son and we’re going to love him no matter what,” Kathryn said. “We just want the best for him. He is everything to us, he is our life. We will make sure each and every day he knows how much he is loved and how very special he is to us.”

The Waynes have set up a “GoFundMe” account which can be reached at www.gofundme.com/lj854w and is being spread on Facebook in order to collect donations to take Wesley to St. Louis. For those not online or who prefer not to donate online, donations can be sent to the Tyler Star News, Wesley Wayne Fund, P.O. Box 191, Sistersville, WV 26175, or can be dropped off at the office at 720 Wells St., Sistersville. Make checks out to Kathryn Wayne.