Vol. 20 •Issue 22 • Page 12
‘Darius Goes West’
Documentary Chronicles Journey of Duchenne Muscular Dystrophy Patient
When Darius Weems, 18, was put into a wheelchair seven years ago, his friend Logan Smalley knew it was a turning point.
For Darius, who had never left his hometown of Athens, Ga., the wheelchair symbolized much more than a loss of self-mobility. That day signaled that his Duchenne muscular dystrophy (DMD), a disease with which he was born, was worsening. His older brother Mario had died from the same disease at age 19.
DMD is the most common fatal genetic disorder to affect children around the world. Most are boys. Children with DMD like Darius cannot produce dystrophin, a protein necessary to sustain muscle strength and function. As a result, every skeletal muscle in the body deteriorates gradually, leading to respiratory failure, heart failure and debilitating orthopedic complications.
Approximately one in 3,500 boys is born with DMD. An estimated 15,000 to 20,000 children in America are afflicted.
Although much is known about DMD, few current treatments exist. Doctors recommend steroids and daily stretching exercises, but these approaches are inadequate. Steroids have been shown to delay the progression of the disease, yet they can entail serious side effects.
As DMD worsens, many boys need orthopedic braces and corrective surgery to treat muscle contractures. And all boys with DMD will eventually need the use of a wheelchair, most when they are between 10 and 12 years old. Most will die in their late teens and early 20s. There is no cure.
Pimp His Chair
As a counselor at Project REACH camp, Smalley, now 25, remembers Darius became excited by the idea of “tricking out” or customizing his wheelchair. Darius thought they could add gold paint and chains to emulate rims for starters.
True inspiration struck later when they were watching MTV’s Pimp My Ride, a car show which features dilapidated autos being tricked out by professionals. “I told him, ‘Oh, wow, let’s go out there and see if we can get your wheelchair pimped,'” Smalley recounted. To get the project under way, they contacted the producers and charted a road trip to Los Angeles in the summer of 2005.
The resulting documentary, Darius Goes West: The Roll of His Life, chronicles this journey. More than exposing the audience to DMD, the movie is about a teenage boy’s first rollicking exploration of the world.
“When you’re friends with someone with a unique mortality rate, there is a sense of urgency,” said Smalley, who directed the documentary. “But this is not a disease film at all. It is a comical and poignant road trip movie.”
Throughout the documentary, the wheelchair represents Darius’s quality of life and his need to express his individuality. “It focuses on what we have in common,” he said. “Some people want to customize their car; and some people can’t drive and want to customize their wheelchairs.”
Aidan’s Generation
Maria McDonnell and her family also appear in the film, showing how DMD affects entire families. Her youngest son Aidan, 7, was diagnosed three years ago.
“My husband couldn’t eat for weeks, he was so sick. I was holding up at first, and then I crashed. It was so surreal,” she said. “You never think anything bad could happen to your kids.”
Her way of coping was to educate herself in hopes she might understand the disease and possible treatments. At first, she read everything available and frequented Internet chat rooms and online forums.
“I was never on message boards before, but they are invaluable. Nobody knows more than other parents,” said McDonnell, a poet and Albright College professor in Reading, Pa.
Since those early days, she has scaled back her research, focusing now on her son’s current condition. That means mastering the art of living in the moment. “I probably tell Aidan 100 times a day that I love him,” she said. “I don’t look to the future with hope; I don’t look to the future with despair. I just don’t look to the future.”
She first encountered Smalley and Darius through a DMD message board they were using to raise awareness and funds for the documentary. They have since become close friends. “Once you get to know them, you’re family,” she explained.
Smalley and McDonnell agree that socioeconomics have played a large role in the differences in Darius’s and Aidan’s care. Darius’s mom was 15 when Mario was born and was unequipped to deal with the disease. She relied on health care providers to advocate for his treatment with mixed results.
Aidan, on the other hand, takes steroids and has experienced significant benefits, thanks to his mother’s advocacy role. For example, he can now run 10 meters in four seconds rather than eight he needed previously. Because of the steroid therapy, strangers would likely not even notice his slightly waddling walk or the way he sticks out his belly to balance a body that is weakening from the inside out.
Spinal fusion surgery is inevitable for most DMD boys. It entails surgical implantation of rods in the spine; for many, it’s the beginning of harder times. Yet only 5 percent of boys like Aidan who take steroids need the surgery. They are on their feet longer, and the muscles that support the spine don’t weaken as much.
For some boys, ventilation is needed to provide respiratory support. In the past, this meant having a trach; now non-invasive ventilation and bilevel positive airway pressure have gained favor.
“It’s a shame that standards of care are so variable,” McDonnell said. “Some people are able to fly from Louisiana to Cincinnati for check ups.” Others are not so lucky. She has encountered kids who died at age 16, long before they should have. “Their parents just didn’t know to fight for better care,” she explained.
Darius realizes that even if a cure came along now, it would be too late for him. That’s why in the film Aidan represents the next generation, the boys who could still benefit. So just as Mario once asked Logan to look out for his little brother, Darius asks the public to look out for his little brothers, kids like Aidan.
For boys with DMD and their families, there is some hope in the form of recent research, although most of it is drastically under-funded. That is why all proceeds from the documentary will go to Charley’s Fund, a foundation investing in scientific research that shows the most promise of saving this generation of boys.
“There are incredible human clinical trials that are showing promise,” Smalley said. “Darius is devoted to helping these kids.”
Finally ‘Tricked Out’
Ultimately, Darius was not permitted to appear on the television show. Smalley, who read the terse rejection letter, believes there were a lot of holes in the producers’ reasons. “They led us on and let us down,” he said. “Their excuses were very lame.”
Yet the 7,000 mile journey was not fruitless. When the two returned home, a Georgia customizer heard of their plight and pimped Darius’s wheelchair. Now it is equipped with a television, Playstation 2, iPod, hands-free speaker phone, orange Lamborghini paint and—yes—real spinner rims.
“We have no regrets,” Smalley explained. “We never imagined this story and movie would reach the heights it has.”
Darius Goes West has earned 24 awards at 29 film festivals. With strong grassroots support from the DMD community, Smalley hopes to secure DVD distribution.
Since the film’s debut, Darius’s health has continued to decline. His respiratory muscles are weakening, putting increased pressure on his lungs; his range of motion has become further limited. “He can still move his wrist upward, and this allows him to play videogames, write or read,” he said. “It’s a pretty predictable disease.”
In the end, Darius and Aidan prove for certain that life, even when imperfect, is always worth the ride.
“The thing that excites me the most is when someone leaves the theater excited to reach a goal, no matter what,” said Smalley.
To learn more about DMD, visit the Muscular Dystrophy Association Web site at www.mdausa.org or Parent Project Muscular Dystrophy at www.parentprojectmd.org. For more information about Darius Goes West, visit the film site at www.dariusgoeswest.com. To donate to Charley’s Fund, visit www.charleysfund.com.
Shawn Proctor, associate editor and Web editor, can be reached at [email protected].
