Job's syndrome no problem for 7-year-old motorbike champ Colton Nelson


Colton Nelson is only seven and he races motorbikes, even though he has a rare immune disorder called Job’s syndrome.

It's just a few minutes until the races begin, and Colton Nelson still isn’t dressed.The seven-year-old has been romping around the Gold Country Fairgrounds, in Auburn, US, in partial gear for nearly an hour, skirting among tents to peek at the growling motorcycles in the dusty Auburn night.

With him are Enzo “The Rabbit” Sorani and Sammy “The Bullet” Waddill, pint-sized racers with whom he’s been competing at “Fast Fridays” all summer. The three make their way around the stadium’s pit, greeting fans and waving at pros until their dads rein them in.

Back at the tent, Colton swigs a Mountain Dew before strapping on more padding than an NFL player. Atop his visor helmet sits a plush monkey with banana – a Velcro-ed charm that separates “Colt 45”, as Colton has been dubbed, from the pack.

Colton has a rare immunodeficiency condition called Job’s syndrome, which causes him to suffer rampant eczema, among other symptoms. The Anti-Monkey Butt Powder that his parents bought to ease the itching inspired the mascot for his peewee dirt-bike campaign. 

The syndrome leaves him vulnerable to a variety of symptoms, including recurrent bacterial and fungal infections, bone density issues and severe allergies.

Though fragile in daily life, the boy in the orange jumpsuit is a force to be reckoned with on the track, cutting stealthily among racers before emerging the frontrunner of the 11-bike brawl. He ended the night in first place, an unsurprising addition to his winning season record.

“He really shouldn’t be doing what he’s doing, but we don’t know how long he’s going to be able to do this with his condition,” says his father, Dave Nelson. “We’re just letting him enjoy himself and being there to support him.”

Colton (with the funky helmet) waits for his first race last month at Big Time Speedway in Prairie City, California. — MCT
Colton (with the funky helmet) waits for his first race last month at Big Time Speedway in Prairie City, California. He has a rare autoimmune disease called Job’s syndrome, which requires he be injected with gamma globulin once every 21 days to build antibodies that he does not naturally have. – MCT

Job’s syndrome has been reported in about 250 people worldwide since it was discovered in 1966. 

Colton’s variant, called Hyper IgE syndrome, causes his lymph nodes to overproduce IgE, one of the five antibodies necessary to protect the human body, but under-produce the other four, says Dr Travis Miller of The Allergy Station at Sacramento Ear, Nose and Throat.

“His immune system is essentially wasting time making IGE when it should be fighting other things,” he says. “The more aggressive the infections are, the shorter the lifespan. If we can keep him infection-free and growing, I think we’re going to give him the best chance at a normal lifespan.”

For Dave Nelson and his wife, Danielle, the goal is just getting Colton to age 10. After that, Miller expects the boy’s lungs will be mature enough to fight simple infections.

Miller, an allergist and immunologist who has treated about 15 cases of Job’s, first spotted the elusive disease when three-year-old Colton came in with severe allergies. But it wasn’t until his fourth birthday, after being rushed to hospital with a collapsed lung, that tissue samples were sent to the National Institutes of Health. Doctors there diagnosed him with Hyper IgE, caused by a “stat1” mutation in his DNA.

Since then it has been a bumpy ride for Colton’s parents, owners of Auburn’s Dingus McGee’s restaurant, who walked their son through round after round of antibiotics before finally finding a temporary solution, if not a cure.

Colton’s current treatment, called intravenous gamma-globulin therapy (IVIg), involves regular injections of a powerful serum comprising antibodies from donors around the country, which basically acts as his immune system. A similar treatment has been used in the military since the 1950s to protect soldiers exposed to foreign disease, says Miller.

Colton Nelson plays with his toy motorcycle in his backyard. He has a rare autoimmune disease called Job’s syndrome, which requires he be injected with gamma globulin once every 21 days to build antibodies that he does not naturally have. — MCT
Colton plays with his toy motorcycle in his backyard. – MCT

Once every 21 days, Colton goes home from school and for two hours undergoes intravenous treatment as the serum is pumped into his bloodstream. He doesn’t seem to notice and goes about other activities.

During one recent treatment, his blue eyes, separated by a broad nasal bridge typical of children with Job’s, are glued to the motocross videos playing on loop on a flat screen. He turns to his dad only to ask for a snack. Later Colton leaves his dad in the kitchen with the visiting nurse because it’s a parent’s job to talk about any changes in treatment or to deal with the insurance company.

It’s a seven-year-old’s job to play. Undeterred, Colton wheels the IV pole outside.

Once the serum is administered, Colton will have nearly three full weeks to do almost anything other kids can do. He chooses to blaze through the dust on a 50cc dirt bike. His latest model was donated this summer by KTM Racing, making him one of the youngest factory-sponsored riders in the US.

Colton showed an interest in bikes as a toddler, said Danielle Nelson, and continued popping wheelies after facing six bouts of pneumonia in as many months and developing an expansive list of allergies including dairy, gluten, strawberries and sunscreen.

The Nelsons decided motorcycle racing wasn’t the worst thing that could happen to the younger of their two sons. So they made the call in spring 2013 to Gary Davis, a motorcycle stuntman with a resume including The Amazing Spider-Man, Independence Day and Terminator 2. Davis, who lives and trains in Auburn, agreed to take Colton under his wing pro bono, and the tenacious tyke was on the tracks by summer.

Aaron Sorani, father of Enzo and longtime fan of Colton’s, calls the boy’s ability to overcome his challenges and stay in the game “amazing”, but notes that for any parent, having a kid on the track comes with a sharp pang of anxiety.

“In a lot of sports, especially motor sports,” he says, “when you support your child, you have to let go of that fear and know that it’s when, not if, he’s going to get hurt.”

Colton has taken a few spills on the track, his mother says, but has been blessed with minimal injuries except for a stye, likely caused by the track’s dust.

Speedway racing, a solo sport, is actually preferable to little league for someone with Colton’s condition, because it limits his exposure to kid germs. What might be a routine cold for a schoolmate could be a hard hit for the compromised second-grader.

The Nelsons have made a point of keeping their son in school despite doctors’ pushes for him to be taught at home. He keeps a few masks in his backpack, which he can put on between treatments when the serum starts to wear off. He lies down in the nurse’s office if he’s feeling less than 100%.

“He’s actually a go-go-go-go kind of kid,” says Danielle Nelson. “He resists being sent home. And he’s really in tune with his body, so he’s not going to tell you that something’s wrong unless it really is. He’s like a little adult in that respect.”

So adult, in fact, that he’s branching into philanthropy with a newly launched fundraising campaign, “Monkey Butt Racing”. The foundation, conceived by Colton, Enzo and Sammy, aims to raise money for Job’s syndrome research, says Dave Nelson.

Colton also has a dream of visiting children’s hospitals with his gear in order to cheer up patients.

“Kids in the hospital, they can’t get out of bed, and they can’t go watch what bikes look like,” he says. “If we start bringing bikes to the hospitals and schools, kids that can’t get out of the bed, they can see the bikes so they know what they look like and what they do.”

Until then, the young racer will keep on revving the engine throughout the Sacramento region. On a recent Friday, he tried his hand at the more trick-heavy sport of motocross for the first time.

As Colton ages, his doctor says, he may become more prone to brittle bone syndrome, osteoporosis and scoliosis. But that’s for later. “I see no reason why he can’t do anything he wants to,” Miller says. “Any kid can fall off their bike. Any kid can get a scrape or a cut. For riding the motorcycle, I think it’s fantastic. He’s living his life and his dreams, as he should be.” – The Sacramento Bee/McClatchy-Tribune Information Services


Health , child , job's syndrome , bike racing

   

Across The Star Online