NASCAR superfan Travis Carpenter hasn’t let a rare genetic disorder define him. His love for racing and all things NASCAR has helped heal his soul.
Travis Carpenter steered his motored wheelchair up to a much larger motorized vehicle. Without any help, he lifted himself out of his personal form of transportation and stood nose to nose with the No. 18 Joe Gibbs Racing Toyota. He then turned to his mom for assistance, knowing he couldn’t get onto the inspection platform on which the car sat alone. It was perhaps a foot high — too high.
After a quick boost, Carpenter shadowed the NASCAR official, providing a hand wherever he could. He raised onto his tippy toes to measure the height of the hood. He bent over at the waist to mark the quarter panel as instructed. He did it all with no complaints.
Moving his body like this and into these positions normally would be uncomfortable.
“I forget about my tumor,” Carpenter said. “My pain.”
Carpenter, a 12-year-old boy from Salt Lake City, has a rare genetic disorder that affects his nervous system called neurofibromatosis. NASCAR is his medicine of choice, much different from the treatment he receives at the National Institutes of Health in Bethesda, Maryland, which is where he was staying this 2017 October weekend for his semiannual check-up.
I forget about my tumor. My pain.
A trip to Dover International Speedway wasn’t exactly what the doctor ordered, but his mom, Kelly Carpenter, rented a car and drove the two hours with her son anyway. Travis already had completed half of his required four days of clinical-trial appointments and was given the weekend off. The break in his schedule was intended for rest and recovery.
That didn’t happen. Not when there was 1-mile track 100 miles away that could grant him freedom from the disorder he can’t truly escape. No cure or proven treatment has been found.
“Sometimes it is hard for me,” Travis said. “Sometimes when I have pain in my leg, I don’t even want to move. I usually just sit on the couch and let my leg rest.”
There wasn’t any lounging around this Sunday morning. The Carpenters arrived early, ready to enter as soon as their garage passes went into effect at 8:30 a.m. Once in, they searched for Kyle Busch’s No. 18 car and soon found themselves following it through the inspection line. NASCAR officials allowed and even encouraged it, which wasn’t abnormal for the process but a first for Travis.
Busch, who happens to be Travis’ favorite because of his candy paint schemes like the M&M’s Caramel design that weekend, passed inspection. Travis gave the final thumbs-up before returning to his wheelchair and heading toward the stands, where he eventually watched Busch beat out 39 other drivers to win the Apache Warrior 400.
“Somebody easily could have told him he was our good-luck charm for the day,” said No. 18 interior mechanic Todd Foster, father of two. “It worked out.”
Better than they could have imagined.
“The officials, when they let Travis inspect the car, he’s like, ‘I can actually do this,’ ” Kelly said. “There’s some stuff where I don’t know if his body would let him. It provides some limits to him.
“Some of the limits, though, he crushes right through and it’s like, what limits?”
• • •
Travis is the one in 3,000 born with neurofibromatosis, which can impact the growth and development of nerve cell tissue and therefore cause tumors anywhere in the body.
It’s the reason he uses a wheelchair. Travis’ specific type, NF1, varies from person to person. His large tumor — technically a complication called plexiform neurofibroma — begins in his lower back, goes through his hip and extends down his left leg. This has made his left leg longer than his right, causing orthopedic issues. He didn’t start walking until he passed age 2.
“I should have already been walking by then,” Travis said.
He has had to re-learn how to walk 10 times. Right now, at age 12, Travis’ left leg is about 1.5 inches longer thanks to surgery. When he was 7 years old, though, it was a 3-inch difference. He has had to wear special shoes with lifts to even his stance.
In addition to his wheelchair, Travis has a walking cane — nicknamed after Kasey Kahne, the retired NASCAR driver — he uses for shorter distances. He also wears a leg brace that’s sort of like an advanced shin guard.
“People with NF have a lower success rate of healing from fractures than non-NF individuals,” Kelly said. “So if we can prevent the break from happening, then we don’t have to worry about trying to heal it.”
Again. Travis has broken three bones, with two — femur fractures — requiring surgery.
The brace is custom-made and features photos of his two favorite drivers’ cars: Busch’s No. 18 M&M’s Caramel Toyota, the same one he inspected, and David Ragan’s No. 38 Shriners Hospitals for Children Ford.
Both drivers have signed it. Ragan has done so twice. Busch’s crew chief, Adam Stevens, added his autograph.
Travis always has been a Busch fan but started to also cheer for Ragan when he realized the Front Row Motorsports wheelman supports Shriners, the hospital chain with a location that Travis visits for his long-term orthopedic care in Salt Lake City.
“It’s almost like Travis and I are on the same team,” said Ragan, who has two daughters. “I’m a member of the Shriners fraternity.”
When Travis learned back in March his tumor had shrunk 38% — number up to 39% in August — he exclaimed: “I have David Ragan shrinkage!”
“It’s encouraging and, I think, rewarding for us to see such a strong will from a young kid,” Ragan said. “It can give us all something to work on and to try to look and think about how we can do better in that same area as an adult.”
It’s encouraging and, I think, rewarding for us to see such a strong will from a young kid. It can give us all something to work on.
Travis is in the midst of his third clinical trial, the fourth round of experimental medicine. This one began in 2015 and requires him to take a Tic Tac-sized pill — a targeted drug — twice a day, dictated by eating restrictions.
Every six months, Travis goes back to NIH for tests. Doctors run lab work, do an eye exam and monitor his heart health. Strength and reflexes are checked as he goes through physical and occupational therapy. There’s normally an MRI, too.
This trial, all in all, is going well. The only caveat: Travis’ brown hair has turned bleach blonde.
“It could be non-dyeable purple for all we care,” Kelly said. “If that’s the biggest side effect, we’ll take it.”
• • •
Both Travis and Busch were dressed to impress the first time they met, trading in their respective No. 18 gear for tuxedos.
In 2015, the whole Carpenter family — mom, dad and three sons — traveled to Las Vegas for the NASCAR Awards. That year’s winner of The NASCAR Foundation’s Betty Jane France Humanitarian Award, Jeff Hanson, supported the Children’s Tumor Foundation. Travis was invited as CTF’s child representative, picked by Jill Beck, executive director of The Race Day Foundation, which evolved through the CTF’s Racing4Research initiative.
“He had no problem walking up to all these guys or rolling up to them,” Beck said. “You have to appreciate that because a lot of people would be starstruck, right? You’ve got 16 of the top drivers in NASCAR right there, and he got to hang out with all of them and didn’t care. He just went up, introduced himself and asked crazy questions. It was great.”
Not much is scary after 37 MRIs.
So when Kelly nudged Travis once inside, motioning to Kurt Busch right behind them, Travis turned around and immediately asked the one thing he’d been eager to know: Where’s Kyle Busch? Kurt smiled and pointed out Kyle’s current location “because they’re brothers,” Travis explained.
Travis grabbed the picture he drew specially for Kyle — basically a thank-you card for the season — and went over to give it to him.
“I was so happy to meet my favorite driver,” Travis said. “So happy.”
That was the year Kyle won his first Cup Series championship. It was a weird one, too. He raced in just 25 of the 36 Monster Energy Series races, sitting out the first 11 after sustaining injuries to his right leg (compound fracture) and left foot (broken) in a crash during the opening race for the Xfinity Series, in which he competed part-time, at Daytona International Speedway.
Travis thought Kyle’s season was over after that.
“He goes, ‘Oh, no, Kyle Busch,’ ” Kelly said. “And when he found out he broke his leg, he’s like, ‘Well, if he has to have a brace, I hope he gets his car on it.’ It was one of those things where Travis can relate to him and kind of knew what he had to go through.”
Any connection is a connection.
Jeff Hanson, the award winner who Travis stood next to on stage at the Wynn Las Vegas in honor of CTF, also has neurofibromatosis (NF1). Hanson’s tumor, though, is on his optic nerve, leaving him visually impaired.
“It’s different, yes,” Hanson said. “But it’s been fun to have him grow up and help each other. … He’s a bubbly little kid. He’s fun. He tells jokes. He’s fun to be around.”
The two keep in contact through Facebook and Christmas cards.
Hanson is an artist — painter, really — and auctions off his work to raise money for foundations like CTF. He has raised $5.8 million in the past 13 years. His paintings tend to be heavily textured and consist of bright colors. A design even ended up on one of Travis’ special-made braces.
“He’s so cute,” said Beck, who has a daughter Travis’ age. “I mean, his situation is not awesome. It’s actually really poor. And as he grows, his challenges aren’t going to get any easier.”
And he knows that.
“The clinical trial people ask if he wants to keep taking the medicine, and he says yes,” Kelly said. “He goes, ‘I don’t want any other kids to go through what I’ve gone through.’ ”
• • •
The latest dose of unprescribed medicine is 700 miles away at another 1-mile track.
This weekend, Travis is going to ISM Raceway for his fifth NASCAR race. He claims he’s going to wear both Busch and Ragan T-shirts, swapping back and forth if necessary, because it’s too hard to pick just one. Ragan is retiring from full-time competition at the end of the season, and Busch’s playoff hopes are still alive in the Round of 8.
“Kyle should make it to the Championship 4,” Travis said. “I picked him to win the championship again.”
His mother countered: “Do you ever not pick him?”
“No,” Travis said.
Travis is well aware the last time Busch won a title was 2015.
In fact, he knows a lot about NASCAR. He rattles off previous winners like no big deal. Las Vegas Motor Speedway in 2016? Brad Keselowski. Phoenix in 2016? Joey Logano. Dover in 2017? Kyle, of course. Vegas in 2018: Kevin Harvick.
Those may be the four races Travis has attended, but he’s 12 right now so consider the age he was at the time of the events.
“Travis is mature, I think, beyond his years,” said Ragan, who receives health updates from Kelly through email. “Whenever young kids are around other people, sometimes they clam up. You know, my girls are around people all the time, and when they get into a busy scene in the garage or pit road, they want to hug your leg or hide behind your leg. I know kids can be overwhelmed by that, but Travis was very natural, easy to talk to and answered a few questions.”
The same will happen in Phoenix.
Surely, Travis’ curiosity will get the best of him and he’ll ask Ragan what races he’ll run next year. Or maybe he’ll convince Ragan to sneak him into a driver meeting again like he did last time at Phoenix. That was fun.
Then, at some point, Travis will undoubtedly knock on the No. 18 hauler looking for candy. There’s a drawer stocked full inside that he has raided before. Maybe he’ll even bring his own Ziploc bag from home this time.
They may be big-timers. Travis just considers them friends.
The first time Foster met Travis: “To me, he just acted like it was any other day. If you look at him and realize what he’s got going on in his life, he seems like he’s always in a good mood, like nothing every really bothers him. … It’s almost like he can’t have a bad day.”
It’s almost like he can’t have a bad day.
If only that were true.
The battle isn’t over. It might never be.
In four years, when Travis turns 16, Kelly isn’t sure if he’ll be able get his driver’s license. Ideally, yes. With the functioning and learning disabilities that accompany his neurofibromatosis, though, only time will tell.
Odds are Travis won’t be a professional NASCAR driver one day. But he can still accomplish his dream to do, as he put it, “something in NASCAR.” He once told his mom he wants to be a crew chief so he can boss people around but now claims he’s still deciding. And that’s OK because, in the meantime, Travis will continue to crush right through certain limitations with the help of his favorite sport.
“Medicine can take him so far,” Kelly said. “But racing, being at the track, it just heals his spirit and heals his soul in a way medicine can’t touch.”