Rare genetic condition no obstacle for Turlock 12-year-old

James Ross is a lot like countless other 12-year-old boys.

He loves to draw. He hates math. He's a fan of Christian rock, SpongeBob and YouTube.

Still, James, who lives with his parents and 15-year-old sister in Turlock, is a little different. He holds a pen awkwardly. He wears size 13 shoes. Like children with autism, he's prone to phobias, obsessions and tantrums.

James has Sotos syndrome, a rare genetic condition. Children with Sotos syndrome grow very quickly -- James weighed some 40 pounds when he was 2 years old.

They have large hands and feet -- James' footprint wouldn't fit into the allotted square on the souvenir birth certificate from the hospital.

They often have learning delays, emotional issues and sensitivities to noise, all of which James lives with, to different degrees.

"He's come a long way," said his mother, Christy, who once thought her son wouldn't be able to live on his own.

"Now I think there's something big out there for him," she said. "Someday, he'll get married, have a family."

That's huge, considering James' parents worried about him from the time he was born. James weighed 9.5 pounds and measured 22 inches at birth. He had problems feeding. He didn't wriggle as much as Christy and her husband, Tracy, thought he should.

A pediatrician dismissed the couple's concerns. A neurologist advised them to wait and see. It wasn't until the Rosses saw a geneticist that they got an answer: Sotos syndrome, marked by large feet, large hands and poor muscle tone, among other things.

"We were relieved," Christy said. "We knew something was wrong, we just wanted to know what."

Doctors told the family the disorder is very rare; about one in every 15,000 children is diagnosed. They predicted James would have developmental delays and problems controlling his emotions.

What would James be like as an adult? Doctors didn't know. While people with Sotos syndrome have normal life expectancies and often "grow into" their large bodies, others have problems with coordination and social skills throughout life. Some have normal intelligence, others are limited intellectually.

Developmentally, James lagged behind other children his age. He first sat up at 9 months and didn't walk until he was 2½ years old.

In terms of intelligence, James is on the high end for someone with Sotos syndrome. He just finished sixth grade in a class for learning-disabled students at Turlock's Julien Elementary School. Next year, at Dutcher Middle School, he likely will attend at least one regular education class -- English, his favorite subject.

A decorated Cub Scout

James' parents are quick to point out his successes.

Take his experience in Cub Scouts. Tracy signed his son up to learn social skills. James went on to Webelos and ended up earning his Arrow of Light award, Cub Scouting's highest honor.

He also takes part in the after-school program at Julien Elementary. Christy, who quit her job when James' needs were too great, went back to work as a medical receptionist when he was in third grade.

At first, she and Tracy were hesitant to enroll James in child care because, even at 8 years old, he would rage if things didn't go his way.

Zack Ripley, a recreation leader at the time, quickly learned to handle the outbursts. "It wasn't easy," said Ripley, now the program's site manager. "Sometimes he'd run out of the building, screaming and angry."

Ripley would go after James, and the two eventually got to the point where they could talk about how James was feeling. This evolved into conversations about James' two favorite things: his faith in God and a Christian pop band called The Newsboys.

"James, he loves God," Ripley said. "I see him in the ministry. He's got a really big heart."

His parents agree. "When he's in church, he's in always in the front row," said James' father. "Once, when they were trying to fix the PA system, he went up and led everyone in song."

James is fixated on The Newsboys. Despite his distaste for loud noises, James went to several of the group's concerts with his family. He's met the members of the group. He watches their videos on YouTube.

Introducing ... James!

At night, sometimes he'll hole up in his room, shine a flashlight on his face for a spotlight, and belt out Newsboys songs. He delights in picking out tunes by ear on his keyboard. He also plays the drums.

James is a boy of few words, at least with strangers. But one thing he is eager to speak about is an award he won recently as part of the Association of California School Administrators' Every Student Succeeding program.

The honor went to students throughout the state who overcame obstacles. His parents say he is one of just three students in Turlock to receive it.

James' favorite thing to do in school? "Writing is always fun because you can write stories," he said.

His most difficult subject? "Math. Too many numbers."

The best thing about school? His after-school program and recreation leader Zack. "He's my friend."

James' future? Like most 12-year-old boys, he's not sure what it holds. "I'll be a Christian rock star," he said, "or maybe a rec leader or a pastor."

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