POULSBO — Not many Poulsbo natives have strolled the red carpet. But Case Levenson has. So has his mother and his two sisters. And his friend Jonathan Evison.

The 32-year-old Levenson is the motivation behind the character Trevor, a young man who has Duchenne Muscular Dystrophy, in Evison’s book “The Revised Fundamentals of Caregiving.” The book, which was released in 2012, is now a movie that premiered at the Sundance Film Festival the last weekend of January.

“It was really exciting,” Levenson said of the red-carpet adventure. “And it was a little bit overwhelming. There were so many photographers saying ‘Look this way.’ And then others would say, ‘No, look this way.’ All I could see were spots.”

Levenson, his mother, Ruel, and sisters, Allaire and Amy, flew to Utah for the premiere on Jan. 28. They went along with Evison, a Bainbridge Island author, who was once Case’s caregiver.

And, if you ask Case and his mother, they knew they liked Evison when they met him.

“I pretty much could tell it would work,” Case said of Evison when he applied to be his caregiver in 2004. “He’s easygoing and easy to get along with.”

Thirteen years ago, Evison was in a bad place after a divorce and a stack of rejection letters for novels he’d submitted. His credit cards were maxed out and he needed work.

“I took a 28-hour night course on caregiving in Bremerton,” Evison said. “I had a number of clients and ended up working with Case.”

Evison was Case’s caregiver for three years. The relationship they had is portrayed in the book, some of which is fact and some which is fiction. They did take road trips. Case’s father wasn’t a great father. Like Ben in the book, Evison had a sorrowful death in his past. But there were no pregnant women picked up while on the road. And they didn’t travel to find Case’s father.

“We went to Florida to the amusement parks, and we went to Montana,” Levenson said. “And we took a trip to Oregon.”

That trip to Oregon included a surprise stop in Bend where Case’s mother was competing in a horse show.

“I knew they were taking a road trip,” she said. “But I didn’t know where they were going.”

To which Case replied, ‘You should have seen the look on your face.”

Case is Ruel’s firstborn. Case seemed to be the average kid playing with the other children at the Montessori school he attended. About the time he turned 4, she began noticing that he had to pull himself up to stand.

“He would hang on to the fence when we watched the horse,” she said. “He had a funny gait and walked slow, on his tippy toes. And I noticed he put a rope on the handrail of the stairs and pulled himself up the stairs.”

On a trip to the doctor for an ear ache, she mentioned it.

“While we were there, I told the doctor, ‘Watch him, how he gets up.’ The doctor did and then he knew.”

Tests were done on Case. Family members were tested to see if they were genetic carriers of Duchenne Muscular Dystrophy, or DMD. But nothing was found. It was a random mutation of a gene that caused Case to have the disease.

DMD is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy.

“I remember the doctor saying, ‘Here’s what’s going to happen,’ ” Ruel said. “And I remember thinking I didn’t want to know.”

She was told that Case’s muscular disease would continue to worsen.

“He said there was no cure,” she said, “but there were choices we could make.”

Case was seen by doctors at Seattle Children’s Hospital and the University of Washington Medical Center’s Muscular Dystrophy clinic. Physical therapies and drugs became part of his

life. But much of his childhood seemed normal. The family lived on a horse farm in Poulsbo and Ruel taught riding. Case went to a Poulsbo elementary school. By age 11, Case had to use a motorized wheelchair and would drive himself to school. At one point, he wrote a letter to city officials telling them that they needed to add curb cuts so he could safely get school. They listened and did just that. He graduated from North Kitsap High School in 2002.

“There were the typical battles at school having a special-needs child,” his mother said. “But Case has been pretty independent,” noting that he’s been through half a dozen wheelchairs.

Since high school, Case has worked at the local movie theater taking tickets. He gardens in his greenhouse and he is into trivia, sometimes taking part in local pub trivia contests. He spends time researching things he’s interested in online.

“I’ll come home and he’s online teaching himself math,” his mother said. “Because he wasn’t mainstreamed in school, there are things he missed out on.”

Case has outlived the life expectancy of his disease. He gives credit to his family.

Evison said Case’s mother is a hero.

“She should wear a cape,” he said. “She’s been an incredible advocate for her son. She’s done such a good job of improving the quality of his life. She helped him get approved for a drug therapy that has allowed him to live longer and better.”

Just as they were making plans to go to Sundance, Case became ill and passed out. Paramedics took him to the emergency room. He was diagnosed with a heart arrhythmia and was hospitalized. He had a pacemaker placed in his chest. His sisters, who live in Seattle and Los Angeles, came home.

“It was pretty serious,” Ruel said. “We weren’t sure we were going to be able to go to Sundance.”

But they did get to make the trip. And they met the director, Rob Burnett, and actors Paul Rudd, who plays Ben the caregiver, and Craig Roberts, who plays Trevor, the character based on Case. They did the red carpet and then they watched the film, along with about 1,500 people.

“I thought it was really good,” Case said. “I really enjoyed it. The chemistry between Paul and Craig was very close to how it was with me and Johnny.”

Ruel, too, enjoyed the film and said that the woman who played her did well, but “I’m not as controlling as she was in the movie.”

There were more swear words from Trevor than Case uses, she said. And there were physical movements that Trevor made that Case cannot. And it wasn’t set on a farm.

Still, Evison was pleased with the film.

“The movie was different from the book,” he said. “But it got the spirit of the book. Rob (Burnett) made changes but they worked very well. People who read the book who see the film will recognize it. It’s funny and touching and it was a relief to see it because I really liked it.”

Following the movie, the director introduced the actors, including Rudd, Roberts and Selena Gomez, who plays a pregnant young women who is hitch-hiking when Ben and Trevor pick her up. (Case even got a hung from Selena.)

Next he introduced Evison as the writer.

And then he introduced Case as the “inspiration behind the film.” Every one of the 1,500 attending gave Case a standing ovation.

“I haven’t seen him (Case) squirm like that in a long time,” Ruel said. “They all just clapped and clapped.”

While getting the spotlight for a short time was fun, Case and his mother said the most important part of having a book and a movie tell their story, is giving encouragement to others. They knew Evison was writing about their relationships before the book was released.

“The movie shows about muscular dystrophy and helps educate people about it,” Case said. “People do stereotype and that’s not fair.”

His mother agreed.

“Just because you’re in a wheelchair doesn’t mean your brain doesn’t work,” she said.

Case gives credit to his family for his positive attitude and for his ability to stay engaged and not get depressed.

“I didn’t get a choice (about having the disease),” he said. “But it’s not a reason to be negative. Being disabled only affects your life if you let it.”

‘The best thing that could have happened to me’
Jonathan Evison never forgets the hard times, when his life hit bottom. But he knows it made him who he is.

“It was the best thing that could have happened to me,” he said. “I am grateful for the success I’ve had. I think about how lucky I am. It’s like they say, the definition of success is how far you bounce when you hit the bottom.”

Evison wrote his first novel, “All About Lulu,” while caring for Case Levenson. It was published in 2008. “West of Here” followed in 2011, “The Revised Fundamentals of Caregiving” in 2012, and “This is Your Life, Harriet Chance!” in September.

Evison latest novel, “Mike Munoz Saves the World,” is about an immigrant landscaper from Suquamish.

“I keep writing because it’s my therapy,” Evison said.

Evison remarried and has two children — a son, who is 6, and a daughter, who is 3. His wife has put her career on hold while he writes and promotes his books, but she hopes to open a boutique in downtown Bainbridge Island selling antiques, rehabbed furniture and home decor.

He writes at the family cabin about two days a week. Butcher paper covers the walls and he writes thoughts, ideas and outlines wall to wall. He calls them his “thought maps.”

On Bainbridge Island, he’s often recognized. He moved to the island when he was in third grade. “People on Bainbridge have been incredibly supportive of me,” he said. “It’s been a big advantage.”

And if he’s in literary circles, in bookstores or libraries, he is recognized.

“At the New York Book Expo, people will see me from blocks away,” he said. “But it’s not like that most of the time.”

Looking back, Evison is somewhat critical of his own caregiving abilities.

“To be a caregiver, you need to be emphatic and very patient,” he said. “The people that you’re caring for often times aren’t so happy that they have to be cared for. And you have to set boundaries. That’s something I wasn’t so good at. I took everything too personally.”

As for Case, they’ll “always remain stedfast friends,” he said.

The movie is expected to be in local theaters sometime this summer.

From top: Case Levenson met actor/singer Selena Gomez at the Sundance premiere of “The Revised Fundamentals of Caregiving.” (Ruel Levenson photo). As a child, Case “would hang on to the fence when we watched the horse,” his mother said. “He had a funny gait and walked slow, on his tippy toes.” He was later diagnosed with Duchenne Muscular Dystrophy. (Ruel Levenson photo). Ruel Levenson has been “an incredible advocate for her son,” author Jonathan Evison said. (Leslie Kelly / Sound Publishing)