March family to fight son's blindness with a bike ride across the United States

Published May 20, 2010
By Megan Just
452nd Air Mobility Wing Public Affairs

MARCH AIR RESERVE BASE, Calif. -- When 18-year-old James "Bubba" Frigo Jr. looks at the night sky, he can no longer see the stars.

In 2008, a doctor specializing in inherited eye disorders diagnosed Bubba with retinitis pigmentosa, a degenerative disorder in which photoreceptor cells in the retina die, leading to a gradual decline of vision.

According to the Foundation Fighting Blindness website, most people who suffer from RP are legally blind by the age of 40. The diagnosis of this rare genetic condition was crushing for Bubba and his family, but they're not letting the diagnosis slow them down. In fact, the diagnosis seems to have had the opposite effect.

On June 14, Bubba and his father, Air Force Reserve Senior Master Sgt. James Frigo Sr., 452nd Logistics Readiness Squadron fuels superintendent at March Air Reserve Base, Calif., will embark on a bicycle ride across America. In addition to biking some 4,000 miles, their goal is raise money to help find a cure for Bubba and the estimated 100,000 others who suffer from RP.

"It's a race to cure blindness, and that's what we're doing," said Sergeant Frigo. "If Bubba can retain the rest of his central vision, he can still live a normal life. Our goal, ultimately, is to raise enough money to impact finding a cure and to raise awareness about RP."

While most adults have 120-degree peripheral vision, Bubba's peripheral vision has been reduced to 40 degrees. Sergeant Frigo said there are therapies and implants in developmental stages and clinical trials that may be able to halt the progression of RP.

"We keep hearing, time and time again, there's going to be a cure for RP in the next five years," he said.

"Or in Bubba's lifetime," Mrs. Frigo added. "The doctors have given him hope."

The plan Sergeant Frigo and Bubba hatched the idea for the bike ride across America while biking together in the spring following Bubba's diagnosis. Sergeant Frigo's aunt had completed a cross-country ride several years before at the age of 62.

"I knew it was possible, and I was in somewhat good shape, so I thought it could be done," Bubba said. "I wanted to travel and see what I can see now, with vision."

While the men warmed to the idea of "Frigo's Big Challenge" quickly, convincing Mrs. Frigo, still reeling from her son's RP diagnosis, wasn't so easy.

"I didn't want any part of it at first," she said. "I was hurt. I was upset. I was angry. It's a genetic disease, but we don't have it in either side of our family that we know of. I was going through denial."

Mrs. Frigo is the self-described worrier of the family, the one who asked the tough questions about money, safety and logistics. By August 2009, after teasing the men about not picking a destination like Las Vegas (just 250 miles from their home in Menifee, Calif.), Mrs. Frigo was onboard with the idea of the transcontinental ride and was helping her son and husband make plans and find sponsors.

"I'm looking forward to Bubba completing his goal - to be able to hear him say, 'I did it,'" she said.

Mrs. Frigo will be the men's one-person support crew as she follows behind the bikes in a 39-foot motor home on loan from a local RV company.

"She'll be our masseuse, our cook, our doctor and our mechanic," Sergeant Frigo said.

On June 14, just three days after Bubba graduates from high school, the men will begin the ride in Ocean Beach, Calif. Friends and family will attend the kickoff, and several of Sergeant Frigo's co-workers from his civilian job as a correctional counselor at the California Rehabilitation Center in Norco, Calif., plan to ride the entire first day with the Frigos.

"The first day will take us from San Diego to Ocotillo. That's 108 miles, so we'll see if these guys can push the distance," Sergeant Frigo said.

Cyclists across the United States have expressed interest in Frigo's Big Challenge, including Mike Stone, a Foundation Fighting Blindness ironman triathlete with cone/rod dystrophy, who plans to join the Frigos for part of the ride through Colorado.

"People are just going to show up and ride with us," Sergeant Frigo said. "The friends we'll make along the way will be friends we'll probably have forever."

4,063 miles During their journey to the Atlantic Ocean, the Frigos will cross Arizona, Utah, Colorado, Kansas, Mississippi, Illinois, Kentucky, Virginia, Maryland and Pennsylvania. They expect the ride to take 40 days and will finish in Times Square in New York City.

"I know we can both get through this. I know we can do it. I know we'll make it. We have a lot of good backing behind us," Sergeant Frigo said.

To train for the 4,063-mile ride, the pair rides 200 to 500 miles a week on hybrid mountain bikes fitted with slick tires at an average pace of 20-21 mph. Sergeant Frigo squeezes his practice rides between 12-hour shifts at the rehabilitation center and Air Force Reserve unit training assembly weekends. Bubba rides in the afternoons after school and before sports practices.

"We both have our strengths and weaknesses in areas," said Sergeant Frigo. "I think I'm a little stronger in the hills. Bubba's really good in the flats. A lot of times, he'll draft off me in the hills and I'll draft off him on the flats."

The pair only recently began riding on road bikes, on loan from a German bicycle company. Another sponsor helped them map their route across the United States. They will ride primarily on lesser-traveled roads, except when they must ride sections of Interstates 40 and 80 in parts of the country where there aren't many side roads.

The Frigos are treating the motor home ride back across the country as a mini-vacation and will take a different route so they can see even more of America's scenery.

Sergeant Frigo and Bubba agree the three climbs on the route that will take them to more than 11,000 feet of elevation will be the most challenging part of the ride.

"There's no way we can ride that kind of elevation here," Sergeant Frigo said. "Parking at San Bernardino and riding to Big Bear is 6,000 feet. At Brian Head Pass in Utah, we're going to start at 6,000 feet and go to more than 12,000. I think once we get over those three passes and get through Colorado, we'll be homeward bound."

The diagnosis The Frigos knew for years Bubba had astigmatism. At an annual eye exam with the family optometrist, they inquired about other symptoms Bubba had been experiencing.

"When I raced motocross, it was hard for me to see at night. Walking around the house, I would kick things," Bubba said.

"I noticed he was getting clumsy. He was stepping on the cats," Mrs. Frigo said.

The optometrist tested Bubba for RP and referred him to Dr. Michael Gorin at the Jules Stein Eye Institute at the University of California Los Angeles School of Medicine. Doctor Gorin confirmed the diagnosis after a six-hour series of tests.

"I really didn't know what to think at first, so I just went on with my everyday life," Bubba said.

Bubba is a straight-A student who will begin college at the California Baptist University in Riverside, Calif., this fall, where he plans to major in biology in preparation for a career as a pharmacist.

"I don't let it [RP] get to me. I try to push through it. I just don't do as many things in the dark," Bubba said.

Sometimes, though, nighttime activities are unavoidable.

"With prom coming up, I'm kind of nervous because I'm not sure how dark it's going to be," Bubba said. "Hopefully, the person I'm bringing will help me out."

For a long time, Bubba only shared the news of his condition with his closest friends. Wanting to spread awareness about RP and Frigo's Big Challenge, Bubba has only recently opened up to his peers by posting bulletins about the ride on his MySpace page. Sergeant Frigo, on the other hand, notified the members of his squadron as soon as he knew the ride was a possibility, since he knew the unit compliance inspection and other major team visits and exercises were coming up.

"Everybody in my shop knows," he said. "I've received a lot of positive feedback."

Sergeant Frigo has served at March for 21 years and says the support and prayers from his fellow Airmen mean a lot to his family. He said several members of the 452nd Aircraft Maintenance Squadron have accompanied him on training rides.

"It's a really big undertaking, and the Airmen in the squadron have been paying attention to it," said Maj. Zach Jensen, 452nd Logistics Readiness Squadron commander. "It's inspiring to see how they are tackling the challenge."

Even after father and son have completed the three 11,000-foot climbs and biked the remainder of the journey across the United States, the family hopes Bubba's action to help find a cure for RP will remain an inspiration to others.

"What we've loved about Bubba since he was a little kid is his optimism. I think that's the reason why he's never let this [RP] get in his way," Sergeant Frigo said. "He's always had a positive influence on me. He never looks back." (Air Force Reserve Command News Service)