Foundation Academy student born with Apert syndrome has had eight major surgeries

WINTER GARDEN — Basketball is Justin Williams’ life. It’s his favorite sport to watch, and he’s a big Miami Heat fan. He plays point guard on the Upward basketball team at First Baptist Church Winter Garden, and, if you ask him what he wants to be when he grows up, without a doubt, he will say he wants to be a professional basketball player. His hero is his father, who played ball in college.

Justin also serves as an inspiration to others in his daily life, especially his classmates at Foundation Academy, a private Christian school in Winter Garden.

Justin was born 11 years ago with Apert syndrome, a genetic disorder that causes craniofacial/limb anomalies — the skull bones are fused together prematurely, and the shape of the head and face are distorted. The bones in his fingers and toes were fused together, too, giving him hands with a mitten-like appearance and webbed toes.

OPERATING ROOM

Justin’s parents, John and Stacy Williams, of Ocoee, said there was no indication that anything was medically wrong with their baby before he was born. After his premature birth at Health Central, he was taken to Arnold Palmer Hospital for Children, where he spent 19 days in the Intensive Care Unit.

There is no cure for Apert syndrome, but surgeries are an option to minimize the malformations. Justin, who has a mild case of the disorder, has had eight major operations in his young life, the first two at 8 and 12 months of age. In two five- to six-hour sessions, doctors created fingers and toes — first three and then five on each hand and foot. Justin’s hands have no knuckles, so doctors put a small curve in his fingers to allow him to better grasp objects. Special shoes help him walk easier; he has a short, wide foot, and there are no joints in his toes.

His third surgery took place when he was 14 months old. To allow for brain growth, doctors relieved the pressure in his brain by detaching the skull plates from each other. 

The biggest operation took place when Justin was 9, his parents said. People with Apert syndrome typically have a sunken mid-face; the surgery involved detaching this area — from the eye socket to the upper jaw — from the rest of the skull and placing a halo around his forehead, a dental splint in his mouth and a vertical bar in front connecting the two. Justin wore this for eight weeks, unable to talk, while every day his parents made minuscule turns to a screw, which ultimately pulled his mid-face forward.

He lost 10 pounds in two weeks because it was difficult for him to eat. His mother said they had to squirt juice and poke foods like blended peanut butter and jelly through the side of his mouth.

It was a scary time for Justin and for his family, John Williams said. But when the mid-face apparatus was removed, Justin’s grandfather, Milton West, bought him an Xbox 360, and Justin decided it was all worth it.

“It was hard,” Justin said. “I was happy to have it done with and move on.”

He might face forehead surgery in seven or eight years, his mother said, and he has a tremendous amount of dental work ahead of him.

FAITHFUL FOUNDATION

Before Justin’s surgery last year, fellow students and teachers at Foundation showed support by praying over him. They have done this prior to all of his operations.

“The time was very special for all involved,” said Will Blaine, family pastor at the school and First Baptist Church Winter Garden.

Students wrote individual notes to Justin so he could read them while he recuperated from surgery, and Blaine arranged for all the kids to sign a banner.

“Pastor Will has been such a blessing to all of our kids,” Stacy Williams said.

Blaine said he admires Justin for his positive attitude.

“He has demonstrated great courage and has always been one of the most spirited kids in our school,” Blaine said. “Everyone who knows Justin loves him; he has an amazing heart.”

This month’s virtue is kindness; “Justin epitomizes kindness in all facets of his life,” Blaine said.

Justin said one of the ways he shows kindness is by “helping others when they’re down.”

All of the students are quick to stop anyone who even thinks about bullying him.

“We just drop him off, and we don’t worry about him being picked on,” John Williams said. “His classmates protect him.”

If someone makes a rude comment, what does Justin do? 

“I just ignore them,” he said.

His parents describe him as outgoing and funny, someone who sees himself as a normal child who likes playing video games and hanging out with his buddies.

“He’s a try-hard kid,” his dad said.

The Williamses are grateful to have the support of family nearby. They live near the Tom West Blueberries farm, which operates on former citrus land owned by Stacy Williams’ grandfather, Tom West, and her father, Milton West.

Justin is close to family at school, too; he attends Foundation with a sister and two cousins, which further eases his parents’ minds.

“We’ve always taught him, no one’s perfect,” John Williams said. “Everyone has something going on.”

Blaine said: “Everyone goes through challenges. Kids get to see Justin go through it and say, ‘I can, too.’”

Justin said his gift is that he inspires people, and his advice for people facing a struggle is this: “Don’t be scared. Trust in God that you can do it.”

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WHAT IS APERT SYNDROME?

Apert syndrome is a genetic disorder that causes abnormal development of the skull. Babies with Apert syndrome are born with a distorted shape of the head and face. Many children with Apert syndrome also have other birth defects. Apert syndrome has no cure, but surgery can help correct some of the problems that result.

Apert syndrome is caused by a rare mutation on a single gene. This mutated gene is normally responsible for guiding bones to join together at the right time during development. In almost all cases, the Apert syndrome gene mutation seems to be random. Only about one in 65,000 babies is born with Apert syndrome.

Source: WebMD.com

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Contact Amy Quesinberry Rhode at [email protected].