[quote style=”2″]Riders Make Pitstop in Hermiston En Route to Alabama[/quote]
Angels don’t always come with wings. Sometimes, they come on two wheels.
Michael Staley and Wes Bates may look like ordinary people, but to Scott Griffin, the two men were heaven sent to help raise awareness of a disease that could take the life of his 9-year-old son unless he gets access to a drug that has yet to be approved by the Food and Drug Administration.
Staley, 33, and Bates, 19, who didn’t even know each other a few months ago, are in the early stages of a cross-country bike ride that began in Astoria on June 27 and will end up in Mobile, Ala., on Aug. 14. They arrived in Hermiston on Monday for an overnight stay before heading for La Grande this morning.
They’re bringing along with them Griffin, a documentary film team, some friends they’ve picked up along the way and the hopes of every young child with Duchenne muscular dystrophy, a genetic disease that causes a slow degeneration of the muscles and eventually an early death. It primarily affects young boys like Gabe, Griffin’s son, who was diagnosed six years ago.
‘A God Thing’
The end goal is to get the FDA to approve eteplirsen, a potentially life-saving drug that has slowed down the progression of the disease in a small sample of children in a clinical trial. Griffin met Staley a year or so ago while he and his family were in Washington, D.C., to lobby for the drug’s approval. Staley works in the office of U.S. Rep. Spencer Bachus. It was young Gabe who made the big impression on Staley.
“In typical Gabe fashion, he just took over the office,” said Griffin. “He was opening drawers, talking to everyone.”
Staley had no idea, simply by looking at him, that Gabe was afflicted with a life-threatening disease.
“I thought, ‘My gosh, what a cute little kid,’ ” said Staley. After the Griffins left Washington, D.C., Staley did some research on Duchenne. He was touched by Gabe’s story, charmed by the boy’s personality and determined to help however he could. Being a longtime cycling enthusiast, he hit upon the idea of making a cross-country ride to raise awareness of Duchenne and put some pressure on the FDA to approve eteplirsen.
Griffin says the effort has been “a God thing.” He points to eerie coincidences that he can only chalk up to a plan set forth from up above. For one thing, it turned out that Staley lived just a minute and a half from the Griffin’s home in Alabama. Then, when Staley began looking online for a partner for his ride, he met Bates, another avid bike rider who is on the Indiana University cycling team. Bates was interested in the ride, but became fully committed when he learned the cause behind it. Turns out, Bates has a family friend with the Duchenne.
“At that point I said ‘I need to do this,’ ” he said.
CONTRIBUTED PHOTO
Gabe and his twin sister are two of the four Griffin children. Scott Griffin said he and his wife, Traci, began to notice that Gabe wasn’t developing at the same rate as his sister and showed signs of muscle weakness. A neighbor, who is an occupational therapist, knew about Duchenne and recommended the Griffins have Gabe tested for the disease. When the diagnosis was confirmed, it like the worst punch in the gut, said Griffin.
“My wife fell to the floor in the fetal position and cried “No! Not my baby!’ ” Griffin said. “All the hopes and dreams we had for our family changed in an instant.”
Griffin said when he learned about the existence of eteplirsen, he became determined to get it approved for his son and others with Duchenne.
“We are going to fight,” he said. “We are going to do everything humanly possible to get this drug approved.” On their side is a law passed by Congress years ago that allows the FDA to fast-track approval of life-saving drugs and devices. Yet, so far, the FDA hasn’t approved eteplirsen.
“It’s a fight with the FDA,” Griffin said. “I believe my son has the right to that drug. It’s the FDA’s duty to approve the drug. It has fewer side effects than Tylenol and aspirin. I only know a few things. I know I gotta pay taxes. I know I’m going to die one day. And I know my son is going to die prematurely. I’m just asking the FDA to save my kid’s life and the 15,000 other kids who have this disease.”
Staley and Bates are fighting with them. They are embarking on a 3,369-mile trip. Staley’s longest previous bike ride was 430 miles. Bates’ was just 100 miles. But they are undaunted by the task.
“You have to be all in to do something like this,” Staley said, adding it’s easy to find inspiration. “Every time it seems to get difficult, we think about Gabe and it motivates us to pedal a little further. It’s ironic, but we’re doing something that Gabe can’t do.”
‘Maybe that Day Never Comes’
Griffin said his son serves as a daily inspiration. He and his wife spend hours not only caring for Gabe and their three other children, but are forever researching the disease and tracking efforts to get eteplirsen approved.
“I’m human and I get tired,” he said. “There will be times when I’m at the computer for hours and start to wear out, but then I think of Gabe – who never complains about his condition – and say to myself, ‘Shame on you for getting tired.’ ”
Staley, Bates and Griffin and everyone connected with the cross-country ride have received support from far and wide. The bus that is transporting Griffin and the support crew along the route was donated, as was a truck. Garmin has donated GPS tracking equipment and Scott’s Cycle and Sports shop in Hermiston donated some equipment and performed some bike maintenance at no charge on Monday.
Readers can follow the progress of Staley and Bates’ ride on the Hope for Gabe Facebook page and can learn more about Gabe, Duchenne and how to help by visiting the Ride4Gabe website.
It’s far from certain that their effort will result in the FDA approving the drug that Gabe needs to survive. Griffin can’t bear to think about what will happen if Gabe doesn’t get access to the drug, and dreads the day his son finds out his condition is fatal.
“Think about the day I have to tell my son he’s dying,” Griffin said. “Wait until the day comes when he Googles Duchenne. If we get that drug, maybe that day never comes.”
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