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A day at the movies, inspired by real-life and a good friend

Collin Barnes, Reid Carlisle, Aidan Griffin, Cedric Buckley, Matthew Morgan, and Tyler Burkhart came to see the movie "Wonder" with Connor Carlisle. [Photo courtesy of Kerry Carlisle]
Published Dec. 27, 2017

Connor Carlisle wanted to design an invitation, something special, and he asked Sarah Reed for help.

Reed is one of Connor's teachers at St. Petersburg High School, and her hospitality and tourism class is his favorite. He dreams of designing roller coasters.

So they worked on a flier, and he passed them out to everyone he knew at school. He wanted them to go to a movie with him, to see Wonder.

The blockbuster film, released widely Thanksgiving weekend and starring Julia Roberts and Owen Wilson, is based on Connor's favorite book. The young adult novel by Raquel Jaramillo — written under the pen name of R.J. Palacio — chronicles the story of a fifth-grade boy living with a condition similar to Treacher Collins syndrome, which required many surgeries. Because of his disfigurement, the main character, August, is bullied in school. The story shares what it's like to be different, and how he's often stared at for something he cannot control.

Connor, who is 16, says he has read the book many times. Like August, he has had many surgeries. Thirty-six, in fact.

Connor was born with a cloverleaf skull, which made his eyes bulge and his ears reach near the back of his head. His skull was more cone-shaped than round. Ultimately, it didn't leave much room for his brain to grow.

"I had a very normal pregnancy. We had no idea until he was born," said Connor's mother, Kerry Carlisle, who is a nurse in the Pinellas County school system. "Back in 2001, the outlook was not very good."

Connor also was diagnosed with the genetic disorder Crouzon syndrome and Arnold-Chiari malformation, which means he was born without a fully developed spinal cord, nor its protective covering. He lives with a tracheostomy tube in his throat, which makes his voice raspy and low. He sleeps on a ventilator, and his parents take turns being "on call" in case he needs help in the middle of the night. His long-term prognosis isn't so clear.

His family lived in New York City for nearly 12 weeks straight when he was a few years old, as he underwent several craniofacial surgeries to reshape the bones in his skull. Family photos show a happy, young Connor on the carousel in Central Park, even as equipment halos his face.

"We always made the most out of it, vacation-wise," said Connor's father, Reid Carlisle.

Connor's favorite memory was visiting the Toys "R" Us in Times Square. And he enjoyed playing with his big brother, Reid Jr., who has been Connor's best friend and advocate all his life, while they watched subway cars zip in and out of Grand Central Station.

"I remember really liking the trains," Connor said.

Connor's health continues to be struggle. He fights pneumonia, tracheitis or respiratory infections nearly every year, which almost always land him in the intensive care unit. He was hospitalized twice in August. He hates that he can't swim underwater because of the tube in his throat.

But he tries to do all he can.

Connor is a huge Star Wars fan. He went to Megacon for the first time this year. He's been in Boy Scouts most of his life, and loves to camp with his dad and brother. His parents bring the ventilator, with extension cords, on camping trips. Last summer, he attended Camp Able in Marco Island all by himself. No aides. No parents. Just him.

He loves riding the Cheetah Hunt at Busch Gardens, but the Incredible Hulk coaster at Universal's Islands of Adventure has been his favorite since he was cleared by his doctors to ride coasters in 2015.

"Connor is definitely not the type who likes to sit around," said Tyler Burkhart, an 18-year-old Northeast High student who has known Connor pretty much all his life. "He's always looking for something new to do."

At St. Petersburg High, Reed said the students treat Connor like any other kid, despite having a nurse and teaching aide with him during the day.

"We're so blessed because you never know with any age group, but especially high school. It's nice to see that they treat him right," she said.

Around the halls, Connor is known as "playa playa," a moniker given to him by Kenneth Powell, a coach and hall monitor, said Connor's nurse, Yolanda Anderson.

"When it comes to school, he works really hard. He never wants to be late and sits right up front," Anderson said. Connor, who is a freshman, has made honor roll the last two grading periods, she said. He has been in the Pinellas public school system almost his whole life.

"But in the halls, he's all fun and games. Cute little girls come up and give him hugs every day. Then he nudges me with his elbow and goes, 'Did you see that?' He's so cute," said Anderson, who wheels a medical unit through school, in case of an emergency.

On the Carlisles' dining room table, the medical records and insurance documents are stacked in piles. But Connor's parents focus on giving their son what he needs and take comfort in his outlook.

"He really enjoys life," his mom said. "He's so social, and he has so many friends."

He started the "lunch bunch" in middle school, where he'd invite students into the courtyard — and out of the noisy cafeteria — for pizza once a month. Even though Connor is fed by a tube and can't eat pizza, or anything else. It's a tradition that carried over into high school and helped him make new friends.

Just before Thanksgiving break, Connor handed out the invitations he'd made with his teacher. On the Sunday after the holiday, he went to the Sundial shopping plaza in downtown St. Petersburg to see the movie.

More than 60 people showed up.

It wasn't just friends from school, but people whose lives he's touched over the years. Summer camp counselors. Fellow Boy Scouts. Friends he's had since his days in the neonatal intensive care unit and those he met in the Miracle League, baseball for kids with similar disabilities. Nurses, too, came to see the movie with him.

"It made me really happy to be with my friends," Connor said shyly.

Burkhart attended with his family.

"Connor is a very tough guy," he said. "He's got a lot of inner strength you don't see in a lot of people. It was cool to be there, and such a great surprise to see all the people who came out for him."

Fifteen-year-old Brodie Hislop, who has known Connor since their pre-kindergarten days at LCC Day School, had read the book but enjoyed seeing the movie "with someone who could really relate to it."

The two play board games in the courtyard at school, she said, and he regularly beats her at Connect Four and Checkers.

Before the new Star Wars movie came out, Connor asked Brodie to see it with him. Just the two of them. She said yes.

"I was excited to go with him, because I know he loves Star Wars," she said. "He was on the edge of his seat the entire time."

His enthusiasm is infectious, she said.

"Connor makes me smile. He makes everyone smile."

Contact Justine Griffin at jgriffin@tampabay.com or (727) 893-8467. Follow @SunBizGriffin.

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