Michael Staley wakes up at 3:30 a.m., rides a bike for four hours, then puts on a suit and goes to his consultant job at a Regions Bank building in Birmingham as if it was just any other day.
A little later the same day, Gabe Griffin tries his new motorized scooter in the school hallways. He is going to start middle school this year and he is excited.
Both of them, each in his own way, are getting ready for the Ride4Gabe, where Staley will be doing a 2,200 mile cross-country tour with two other cyclists to raise funds and awareness for Duchenne Muscular Dystrophy.
With his red hair, blue eyes and freckles, 11-year-old Gabe has become a symbol for this fight. He is the face and namesake of Hope for Gabe, a foundation that fights so that kids like Gabe who have Duchenne will have a cure in time.
Duchenne is a fatal genetic disorder that results in muscle degeneration. At the moment it doesn’t have an effective treatment. According to Parent Project Muscular Dystrophy, it is the most common fatal genetic disorder diagnosed in childhood. It affects approximately one in every 3,500 male births, with about 20,000 new cases every year worldwide.
The loss of muscle mass causes patients to be in a wheelchair in their early teenage years and to die in their 20s or 30s as a result of cardiac or respiratory failure.
Gabe was three years old when he was diagnosed with Duchenne. “We kind of knew something wasn’t right,” his father Scott Griffin explained. “He has a twin sister and he wasn’t developing as fast as she was. Our next-door neighbor, who is an occupational therapist, was babysitting him one day and noticed how he got up from the floor. He was doing this thing called the Gower’s maneuver, which people with Duchenne do.”
Gabe’s parents hadn’t heard of Duchenne until that moment. When they looked it up on the internet, what they found left them shattered. “We couldn’t believe it,” Griffin recalled. “These kids typically are on a wheelchair between the ages of 10 and 12, and potentially lose their life between 17 and 22 years old. It’s 100 percent fatal.”
Their worst fears were confirmed by their doctor. Griffin clearly remembers the day they got the phone call, because it changed their lives forever. “I knew the moment she said hello. I knew he had it,” he said.
That is when their fight began. “I looked at [my wife] Traci and said ‘I promise you, with every single breath that I have, that we will fight this to the very end, and when this is over, we will look at each other in the face and we will say ‘We did everything humanly possible to save our child’. And if we are unsuccessful, we will know that we didn’t leave any stone unturned.’”
Griffin is determined not to stop until he has a treatment and a cure for his son. His search took him and Gabe to Washington D.C., where they met Congressman Spencer Bachus to talk about a drug that was being tested by the FDA and could potentially help Gabe. Completely by chance, they ended up meeting the man would turn out to be one of Gabe’s biggest advocates. Michael Staley was Bachus’ chief of staff at the time.
“We were waiting out in the hall and Gabe just happened to run into his office,” Griffin recalled. “He could have gone left or right, but instead he went straight back and ran into Michael.” They met again later, in the meeting with the congressman, Griffin said. “Gabe just took the office by storm with his red hair and his freckles. We sat down and Michael asked us what they could do for us. ‘I have a son with a terminal disease,’ I told him. He looked at me like I was crazy, and he said ‘That little kid that is running around our office is dying?’, and I replied ‘Yes, that’s why I need your help.’”
That moment left a mark on Staley, he admitted. “In a congressional office in Washington there are so many meetings that you have all the time; it’s constant,” he said. “But there was something about the Griffin family that really caught my heart. I can’t explain why we connected so much, but I started to get involved and the more I learned, the more I wanted to be involved. I fell in love with them and their cause and now it is pretty much the mission of my life.”
Although there is no current treatment for Duchenne, there is hope: there are some drugs in the pipeline that could even reverse the process of muscular damage.
The Griffin family got the Gabe Griffin Right to Try Act approved in the state of Alabama, which allows the use of experimental drugs. “It’s funny,” Gabe’s father reflects. “The state couldn’t pass a budget but we got Gabe’s law passed.”
One of the goals of Ride4Gabe is to urge people to ask their congressmen to pass a law called The 21st Century Cures Act, which was passed by the House of Representatives but hasn’t been approved by the Senate. According to Staley, that law would help Gabe and people with other genetic conditions. They are especially interested in two provisions that would allow the following: first, that the FDA would rely on data from previously approved drugs for future approvals (for instance, evidence to approve a drug could be based on case histories instead of new clinical trials), and second, that the patients’ perspectives would be included in the drug approval process.
Those who love Gabe are optimistic, including Staley. “We believe that Gabe could be a part of the first generation of Duchenne patients to have a treatment that is approved to fundamentally change his life,” Staley said. “We believe it is very reasonable that within his lifetime a drug will be available for him that will make his life a whole lot better. It is very sad because we are racing against time.”
While Gabe waits for a drug that could help him, his muscles keep deteriorating. He can’t climb up stairs anymore, and he is starting to have trouble getting up off the floor. He gets around his school in a motorized scooter.
These things aside, he lives a normal life. However, the emotional side of the illness is more difficult, his father says. “There’s so many things he can’t do, and he just wants to be a normal little boy. He watches his brothers play all these sports and he wants to know why he can’t do it.
“And I don’t have a good answer for him. I can say that he has Duchenne but I don’t think he gets the whole picture yet. I think he is smarter than I give him credit for, and he has probably Googled some things, but I don’t think he knows…
“I dread the day… Every parent should dread the day that they have to tell their child that they’re going to die.”
Staley has been a huge support for the family. “I can’t put it into words,” Griffin said. “He is more than a friend. He is family.”
The idea of cycling cross-country ride to raise funds and awareness was actually Staley’s. He offered to do it himself in 2014; that is how the Ride4Gabe was born. The first edition ride went through 11 states in 42 days, from Oregon to Alabama. It was a success: they raised $100,000. After covering the expenses of the ride, they were able to donate half of that money to a research project at the Nationwide Children’s Hospital in Columbus, Ohio. They also obtained media coverage valued at $200,000.
In June 2015 Staley broke his femur in a cycling crash, and the second edition of Ride4Gabe had to be postponed until 2016.
This year’s Ride4Gabe will cover about the same distance as the Tour de France, 2,200 miles, from Maine to Mobile. Staley and his two fellow cyclists, Wes Bates and Payne Griffin, will be riding 200 miles per day for 11 straight days.
They will travel with a documentary film crew and Gabe and his father themselves. The plan is to meet all the political figures they can while en route, as well as other families with Duchenne.
The ride will arrive in Birmingham on Sunday, August 7, and cyclists are welcome to join as long as they can keep up the pace.
The ride will be arduous for the cyclists, and even preparation is rough. Staley is riding about 500 miles a week these days; he rides from 4 to 8 a.m. before he goes to work. But the sacrifice pays off, according to him.
After one hard weekend of training, Staley had to have his knee checked by a doctor. “One of my cycling friends looked at me and said ‘What are you going to do?,’ and I replied ‘What is Gabe going to do?’” Staley said. “I can go through a little bit of pain and lose a little bit of sleep over this because we are doing it for people who can’t. I think I can endure a little bit of pain if it makes a difference in the world.”
Like Staley, Gabe’s dad has decided that, instead of burying his head in the sand, he will go out, talk about it and try to make a difference, no matter how hard it gets.
“As a parent, you should never, ever, ever, have to bury your child,” Griffin said. “And I pray that day doesn’t come. As a dad, my job is to make everything better. When the kid falls down and hurts his knee, it is my job to put a Band-Aid on it. Just to… make it better. And I can’t make this better. I can fight, and I will, but I can’t personally put a Band-Aid on this.
“But by the same token, I am a parent, and it is my job to jump in front of a moving train for my child. Duchenne is that moving train and I am going to jump in front of it every chance I get to try to save him.”