When Terri Cole searched online to find out what ataxia telangiectasia was, what she found was worrying.

She learned that it was a degenerative neurological disorder that targeted the lungs, muscle fibers, the immune system and other systems in the human body.

She saw videos of children with the disorder who seemed weak and struggled to stay up.

But when she looked at her son who had been diagnosed with the disorder at the age of 6, weak and frail were not the words that would best describe him.

He had a fighting spirit, friends said.

Sean Phoenix Cole-Smith, who was well known and well-liked at Jordan High, died April 2, 2020, of the disease. He was 16.

Even though he depended on a walker to maneuver around, his mother said he used it like a car to zoom around from place to place.

When he was younger, Terri said Sean would wrestle with his father and his cousins, and often he would be the one to initiate the rough housing. When his grandmother drove him around, Sean would sit completely still and not move in the backseat. When his grandmother would pull over to check on him because she was worried something was wrong, Sean would quickly jump up and surprise her. He was a natural-born trickster, his mom said.

In 2017 Sean represented Hughes Middle School in a track and field competition between other schools in the district sponsored by the Special Olympics. Terri said his physical education teachers would tell her that he could outperform some of the other kids in push-ups.

He earned a yellow belt in taekwondo while using the walker to support his kicks during training, Terri said.

Using his walker for some support, Sean Phoenix Cole-Smith trains during a taekwondo session before earning his yellow belt. Courtesy photo Terri Cole.

A student at Jordan High School in North Long Beach, Sean was a popular social butterfly who made lots of friends and left a lasting impression on teachers and staff.

When he was older, Sean experienced his first love, as boys do in high school, his mom recalled. Her name was Lucy, and she was a girl who also attended a special needs program at Ability First, a local nonprofit that provides programs and services to help children and adults with disabilities.

Sean would buy her gifts for Valentine’s Day and Christmas, Terri said.

One day, Terri met Lucy’s mom, who told her that she was so grateful for the way Sean treated Lucy because she thought her daughter would never have a boyfriend.

He experienced a multitude of emotions and feelings in his lifetime: happiness, achievement, struggle, sadness, and love.

Annee Boyer, one of Sean’s teachers who was commonly called Mz. Boyer by her students, said he was an icon within the school and loved by many. An entire section of the school’s yearbook is dedicated to him in the newest edition featuring photos of Sean with his friends.

The Jordan High school Best Buddies program gather for a group photo before the eighty-sixth annual Jordan High School graduation at Veterans Memorial Stadium in Long Beach Wednesday, June 15, 2021. Photo by Thomas R. Cordova.

“Sean was just a bright light in our school and in my life,” Boyer said.

A few days before the COVID-19 pandemic closed down in-person schooling, Terri had asked Boyer if she could take Sean to campus after spending most of his time at the hospital. Terri had been very protective of Sean since news broke about a new respiratory virus that was quickly spreading, Boyer said. He had been doing school work from the hospital, and it was proving to be difficult as his condition worsened.

Boyer is an administrator for the school’s Best Buddies program, which connects students with intellectual and developmental disabilities needs and students without them to promote inclusivity. Sean was a prominent member of the group.

“I just need him to see his friends,” Boyer remembered Terri saying.

He visited on March 13, the Friday before school officially closed to in-person learning. It was the last time she saw Sean with his friends. Though it pained her to recall the memory, she said it’s one of the happiest she has of Sean, because she was able to see him surrounded by people that cared about him.

“I wanted her to know he was loved and meant so much to the school—to me,” Boyer said.

Terri Cole has a moment seconds after receiving her son, Sean Phoenix Cole-Smith, high school diploma as she walked for him at the eighty-sixth annual Jordan High School graduation at Veterans Memorial Stadium in Long Beach Tuesday, June 15, 2021. Sean battled and died from ataxia-telangiectasia. Photo by Thomas R. Cordova.

Students at Jordan High celebrated an in-person graduation ceremony last week in front of family at Veterans Memorial stadium. Among the students was Terri, Sean’s mother, dressed in a cap and gown.

Boyer had invited Terri to walk in place for her son and receive the diploma for him.

“His mom is one of the most enduring people I’ve ever met,” Boyer said. “I knew it would be meaningful for her.”

Walking across the stage while holding a portrait of her smiling son was one of the hardest things she’s had to do, Terri recalled. When the announcer called out her name, Terri walked across the stage with tears streaming down her face and collected the diploma for her son.

“It wasn’t easy,” she said. “But I wanted to have that for him. I always wanted him to get the most that he could of his education and to not just let him fall back because of his disability.”

Terri Cole walks for her son, Sean Phoenix Cole-Smith who died, as she holds his photo after receiving his diploma at the eighty-sixth annual Jordan High School graduation at Veterans Memorial Stadium in Long Beach Wednesday, June 15, 2021. Photo by Thomas R. Cordova.