CONCORD, N.C. -- Stephen Thomas was not your average NASCAR fan. His passion for the sport started at a young age and blossomed into love, which provided a respite from the chronic pain he endured since the day he was born. Thomas’ zeal for NASCAR racing was something his caregivers, Molly Holm and Geoff Baer, were more than happy to cultivate.

After being diagnosed with a rare and uncurable genetic skin disorder that left Thomas completely dependent on others, watching his hero, four-time NASCAR Cup Series champion Jeff Gordon, take to the track every week was a blissful escape. Meeting Gordon in 2010 with his mother and stepfather, Sandy and Billy Dart, and then reuniting with Gordon earlier this year were dreams come true for Thomas that helped foster an even deeper love for the fast-paced sport.

It was Gordon’s compassion during that first meeting that left a lasting impression and fueled Thomas to live his life with fervor. Studiously following NASCAR created a desire for him to seize every opportunity to attend races and meet more of his heroes, even under extraordinarily difficult circumstances.

“People don’t understand that NASCAR has been so kind, not only to Stephen, but to other kids,” said Holm, who was Thomas’ nurse for 12 years. “They don’t understand the heart of NASCAR.”

The diagnosis

Thomas was born Sept. 20, 2001, with a genetic condition called epidermolysis bullosa, or EB. The disease causes the skin to blister and break down easily due to a missing protein that is necessary to keep the layers together. Children diagnosed with the disorder are often called “butterfly kids” because their skin is as delicate as butterfly wings. Because of this, Thomas was born with missing pieces of skin on his body. At just a few weeks old, he was diagnosed with EB.

Throughout his entire life, Thomas had to take bleach or vinegar baths three times a week to kill any possible infections on his skin. The process took up to five hours because the bandages covering his body had to be carefully cut away before he was gently lowered into the bath, cleaned and slowly lifted out for his bandages to be redressed.

The disease is excruciating, and Thomas was in chronic pain. Because others rarely saw what was under the bandages that covered nearly all of his body, they underestimated the severe pain EB caused, Holm said.

“Almost his entire back was pretty much skinless,” she said. “He had no skin under his knees and elbows. It’s also internal. It can be in your esophagus where you get blisters, and it makes it hard to swallow.”

Following his diagnosis, Thomas required around-the-clock care. Anything could cause a tear or an infection, so he needed to be dressed in layers upon layers of bandages. It made it impossible to participate in everyday activities, but he was able to feel a sense of normalcy due the bond he shared with his father, William Thomas, over NASCAR.

Making a wish

When Stephen Thomas was 8 years old, tragedy struck. His father, who was his primary caregiver, passed away and Stephen went to live his grandparents. Then, less than six months after losing his dad, the Make-A-Wish Foundation gave him an opportunity that changed his life.

“He met Jeff Gordon, and then he was flown to the Richmond race where Gordon came in second,” Holm said. “I think that it was so fresh after his dad died, and to have that (wish) come true meant everything to him. It probably helped motivate him to want to keep living after such a huge blow. Stephen just loved his father for eight years.”

Holm, who became Thomas’ full-time nurse after his father died, encouraged the young boy’s love of NASCAR. After Thomas turned 18 in 2019, he moved out of his grandparents’ house and decided he was going to live as independently as he possibly could. He resided with Holm and, with the help of her boyfriend Baer, the couple was determined to help him accomplish as much as possible on his personal bucket list. Over the next two years, they attended six Cup Series races at six different tracks, including his dad’s favorite venue, Bristol Motor Speedway.

At Charlotte Motor Speedway in May 2021, Thomas reconnected with Gordon.

“Stephen was so much fun to be around and had a lot of people who cared about him and wanted to see him be happy,” Gordon said. “You would never know that he was dealing with constant pain and everything else that came with his condition. His passion for NASCAR and love for the No. 24 team was so cool to see.”

A brilliant mind

EB affects more than a person’s skin. Children with EB are much smaller in stature, have fairer skin and higher voices. However, patients can be extremely intelligent with many having very high IQs. That was evident in Thomas’ zeal for NASCAR. He was an avid collector of NASCAR memorabilia, including all things related to the No. 24 team, and would spend hours reviewing and examining collector’s items to determine their worth.

“NASCAR promoted his love of buying things on the internet and collecting,” Baer said. “Every week, we would get multiple eBay packages at the house. The whole process for him was going to the races or watching the races and waiting for the cars to come out on his watch list, then ordering the car. … It was all part of his love of NASCAR. It consumed his time, so his EB became secondary to being a collector.”

Thomas’ room was filled to the brim with NASCAR items. He was gifted a side panel signed by members of the No. 24 team and had countless diecast cars, hats, shirts, and other items that he bought with his own money. Baer said Thomas knew the details of each paint scheme the No. 24 Chevrolet donned, including what year they ran and specifics about how each one performed.

“He had a lot of opinions on what they did to the cars, like most NASCAR fans,” Baer joked.

Checking off the bucket list

Several weeks after reconnecting with Gordon at Charlotte, Thomas, Holm and Baer traveled to Pocono Raceway and were invited into the garage. The NASCAR Hall of Famer just so happened to be there and was thrilled to see Thomas again, taking the time to chat with him about all things racing. The young man also got the opportunity to meet No. 24 crew chief Rudy Fugle and the entire team. It was a thrilling experience for Thomas, who also was on pit road with the No. 24 crew at Daytona Speedweeks in 2020.

These encounters further solidified Thomas’ love for the No. 24 team and its current driver, William Byron, who gave him a pair of race-worn gloves that coupled perfectly with a signed hat Byron handed him after he won the Duel at DAYTONA in 2020.

“He followed the 24 car,” Baer said. “We followed Chase (Elliott) when he was with the 24 car and when he went to the No. 9. William Byron came in, we were like, ‘Who is this Byron kid?’ So we researched him and found out that he was a really good driver and was good at iRacing. … Stephen knew all the stats of how William placed in the Xfinity Series, so he was really happy that William was driving the 24 car.

“Meeting (Byron), meeting his hero, you can see in that moment in victory lane, he was just ecstatic.”

A legacy left

After a long, courageous fight with EB, Thomas passed away on Sept. 28, 2021, just eight days after his 20th birthday. But not before he accomplished so many of the items on his bucket list.

The connection Thomas made with Gordon, Byron and members of the No. 24 team was lasting. He also met Hendrick Motorsports owner Rick Hendrick, who took off his hat and handed it to Thomas in victory lane at Daytona. According to Holm, the encounters left the young man on cloud nine.

They also left an impression on Thomas’ hero.

“For me, it was humbling to know the impact the sport had on him as a fan,” Gordon said. “It really gave him something to look forward to every time we raced. Having the chance to spend time with Stephen and other kids with serious illnesses puts a lot of things into perspective. You can’t help but be inspired by the way they handle adversity and squeeze so much joy out of life.

“When I met Stephen, I can promise that I got more out of it than he did.”

Though Holm and Baer now feel a significant void, they take comfort in knowing that Thomas’ presence will live on. The couple ensured that he was able to accomplish as much as possible, even if that meant overcoming extra obstacles just to travel to a race.

Despite the challenges, Thomas’ trips down pit road to hear the engines fire and smell the gasoline in the air allowed him to forget, even for a few short hours, about his condition.

“He was achieving his goals in life,” Holm said. “He really wanted to get married and have kids. He wanted a job. He wanted all those things that he never was going to have, so being able to say that he went to these races and met Jeff Gordon, and that Rick Hendrick met him, made him feel that he was achieving things in life, and that really made him feel good."

For Sunday's playoff race at the Charlotte ROVAL, Thomas' legacy will further be honored. Byron will hit the track with a special decal on his Chevrolet that pays tribute to the No. 24 team's biggest fan and his love of the sport. It's a small token dedicated to someone who lived life to the fullest.

“Stephen had a real passion for life and was not a quitter,” Holm said. “He really believed that life was worth living, no matter how much pain or how much loss he went through, and he believed in fighting for it. Every day of his life that he woke up in excruciating pain, he had to make a choice whether to keep fighting for life or not. I think following his passions was the thing that really motivated Stephen to keep living. Otherwise, life is just nothing but pain and loss."

To further keep Thomas' love of NASCAR alive, Holm and Baer plan on traveling to the 2022 DAYTONA 500 in February. They will celebrate his life at an event he loved dearly, and they anticipate feeling his presence at the legendary track.

“He was going to pursue whatever his dreams were no matter how much it hurt or what he had to do to get there," Holm said. "Even up to the very end when all the odds were stacked against him, he still wanted to fight. To me, that was his message. Follow your passions in life and don’t give up on that.”