A 12-year-old boy from Andrews with a rare blood disorder is the face of the Goin’ Band’s bone marrow registration drive this fall.
Gage Klein loves dirt biking. He likes the feeling of coming over the faces of tabletops and gunning the engine coming in on tight corners. He likes crossing the finish line first.
When the 12-year-old from Andrews races, he wears the number 157. Jan. 5, 2007 is his little brother's birthday – the brother he barely remembers who died of sudden infant death syndrome at 7 months old.
Gage still wears the number, but he isn't racing. Three years ago he was in a bad accident on his dirt bike, and while at the emergency room a nurse tested his blood. His platelet count was at 4,000. A healthy 9-year-old's count would be about 100 times that.
After a year of frequent visits to University Medical Center and a misdiagnosis, the Kleins had a name: Fanconi anemia, an incurable blood disorder. To survive longer than a few years, he needed a bone marrow transplant.
That was two years ago. His mother worries their time is running out.
“We are fighters,” Barbara Klein said. “Every one of us has come together.”
The fight starts with finding a compatible donor. For the last two years, the Kleins have made it their mission to sign up as many potential donors as possible to Be The Match, a worldwide organization matching bone marrow donors with patients. They're getting a little help with that mission from the Goin' Band of Raiderland.
Starting Friday (Aug. 28), Texas Tech University's band will kick off “Banding Together to Be the Match,” a friendly competition with the Baylor Golden Wave Marching Band, to see which team can register the most potential donors. The winner will be announced at halftime of the Texas Tech-Baylor football game on Oct. 3.
Gage will be on campus Friday for the kickoff event – a registration drive for members of the band and an opportunity for members of the Texas Tech community to learn more about what it takes to register as a potential bone marrow donor and why the need remains high. Depending on his health he may return Sept. 30 and Oct. 1 when the band will hold a registration drive for members of the Texas Tech and Lubbock communities, and be the face of a community of people who need a bone marrow transplant to live.
“I'm not going to bury another child,” Barbara said. “I'm going to fight. I'm going to fight hard.”
Life on the racetrack
Four years ago, the city of Andrews put in a new motocross track. Gage asked his parents to let him ride. He was 8.
It wasn't the first time he'd asked, but it was the first time they'd said yes. Barbara said the fear of him getting hurt stopped them all the previous times, but they eventually realized they had to let him live life and got him a dirt bike. It's become his life.
“If he's not on a dirt bike he's around dirt bikes,” she said.
The motocross community makes sense to Gage; he's a little shy and can't quite put into words what he loves about dirt biking, though the smile on his face as he remembered winning his first race gives one indication of what's fun about it.
“I was just really happy that I won,” he said.
Although he has significant extended family in and around Andrews, he found a different kind of family at the racetrack – boys who were his friends except when they were racing, mentors and trainers who coached him to become a better racer.
One of those trainers was Justin Hernandez. Justin accompanied Gage and Barbara to a Texas Tech football practice during the preseason; Gage, who has been coming to Lubbock for treatment for years, has grown to love the Red Raiders. The two boys, separated in age by several years, stand together watching the players scrimmage. Both are quiet. Gage wears red and black.
“He's like my little brother,” Justin said. “He pushes me and I push him, on the track and off the track.”
Gage smiles a little when football coach Kliff Kingsbury welcomes him in front of the team and tells the players to shake his hand. As they do, a few ask him about motocross and share their competition stories. He's just one of the guys.
He's not racing right now, which his mother said may be a harder trial than his illness. For a time after he was diagnosed they let him continue; Barbara said the emotional toll was worse on Gage than any negative physical effects. But in recent months, as his health has become more critical, he's had to stop again.
“It's killing him,” Barbara said. “That's his life. He loves motocross.”
The need for bone marrow
Doctors initially thought Gage had aplastic anemia, a different blood disorder, and he did not get on the bone marrow transplant list right away.
Two years ago they determined it was Fanconi anemia. According to the National Institutes of Health, Fanconi anemia is a rare blood disorder that prevents bone marrow from producing enough new blood cells for the body to function. It also increases the risk of some cancers.
It's incurable; even with a bone marrow transplant Gage likely will only live to be 25 or 30, Barbara said. However, that gives him more time to experience life and doctors more time to find a cure.
For a bone marrow transplant to have a chance at working, the donor and recipient must be a perfect match. Barbara saved stem cells from her younger son, Gaden, who died as an infant, and the DNA does indicate a perfect match for Gage. However, Fanconi anemia is an inherited disease, and there's no way to tell if Gaden had it as well, so the doctors turned to Be The Match to find a donor for Gage.
Anita Gonzales, community event representative for Cook Children's Health Care System in Fort Worth and co-organizer of the bone marrow registration drive at Texas Tech, said Be The Match is necessary because only about 30 percent of patients who need a bone marrow transplant find a match within their families. For many of these diseases, a transplant is the only way to survive.
“He doesn't have that much time,” she said. “If we don't find a donor, Gage will pass on.”
The new normal
Friday will be the first time members of the Goin' Band, including director Duane Hill, will meet Gage. Hill didn't have a specific person in mind when he and the Golden Wave band director settled on a competition, but Gage's situation was a good fit.
He chose this particular service project for the band because he wants students to recognize the role they can play on campus and in their community.
“It is important for students involved in Goin' Band to recognize their wide area of influence around the university and community,” he said. “We take our role as ambassadors of Texas Tech tradition and spirit seriously, and we want to widen our passion for service with this project.”
It'll be a fun meeting between members of the band and Gage, who, with a mop of brown hair, big brown eyes and a shy smile, doesn't look sick – certainly more fun than Gage's normal visits to Lubbock, which involve doctor's appointments, hospitals and tests.
It makes for what Barbara called a “roller coaster of emotions,” a phrase she never understood until her son got sick.
“One moment I'm OK with it and the next moment,” Barbara paused, “she hates it,” Gage finished.
“I hate it,” Barbara agreed.
It's a little easier for Gage. He remembered being told he was sick and it was serious, that he needed a bone marrow transplant and could die, and didn't worry too much about it.
“I really didn't care,” he said. “I knew that God had me.”