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Feature/General
Darius Goes West
By Barbara Smalley
Jan/Feb 2008
A funny thing happened on the way to my son Logan’s pursuit
of a bachelor’s degree in special education at the University
of Georgia. He decided to make a documentary about his young friend,
Darius Weems. Darius has Duchenne Muscular Dystrophy (DMD), the
number one genetic killer of children worldwide, and Logan had
read that scientists had finally discovered the cause of this disease.
He figured that making a movie might help educate folks about DMD.
And maybe, just maybe, it could affect a cure.
Never mind that Logan had no film experience. He had the idealism
of youth on his side. He had passion to promote change and awareness.
He had enormous hometown support, and he had friends, family, and
mentors who shared his dream to help find and fund a cure for this
100% fatal disease.
Hopefully, you’ve heard of “Darius
Goes West: The Roll of His Life.” Heck, you’re probably in the credits,
since that’s how the bulk of the money for this project was
raised (thank you, Athens!).
Las Vegas was Darius's favorite stop on the trip.
Whitewater rafting in Colorado.
Darius and the crew met William H. Macy and Felicity Huffman, who appear in the film.
Darius and crew at the Grand Canyon. (Left to right) John Harmon, John Hadden, Dylan Wilson, Daniel Epting, Jason Hees, Logan Smalley, Sam Johnson, Ben Smalley, Collin Shepley, Andrew Carson, Kevin Wier, Darius Weems
Darius, with Logan, at the beach for the first time ever.
Darius
Photos
It began with a promise
Logan was 13 when he first met Darius at Project REACH, a local
summer camp for children with disabilities. In an effort to get
him “out of the mirror,” I was the one who made him
volunteer there, and he went kicking and screaming. “Just
one week,” I promised. Fortunately, he liked it and the
campers so much that he stuck around the entire summer, then
volunteered or worked at the camp for seven seasons after that.
He had found his niche.
Initially, Logan was closer – both in age and in terms of
friendship – to Darius’ older brother Mario, who also
had DMD. Eight years ago, when Mario died, he asked Logan to look
out for little brother. Without hesitation, Logan agreed to do
so, but at the time, he had no idea what shape or form that promise
would take.
Over the years, Logan watched as Darius’ health slowly deteriorated.
In a few short years, he went from being fully mobile, to using
a walker, to using a wheelchair. In late 2004, Logan decided there
was no need for the quality of Darius’ life to disintegrate
along with his muscles. So he recruited 11 of his friends (including
younger brother, Ben), rented a wheelchair-accessible RV, and took
Darius, who had never seen mountains, the ocean, or even crossed
a state line, on the adventure of a lifetime. The ultimate goal
of their 7,000-mile cross-country journey was to reach Los Angeles
and convince MTV’s hit show “Pimp
My Ride” to
customize Darius’ wheelchair. Along the way, they evaluated
wheelchair accessibility and celebrated the 15th anniversary of
the Americans With Disabilities Act (ADA). But mostly they raised
awareness of DMD, particularly among a generation not familiar
with Jerry Lewis and his annual telethons.
A story of friendship
From Athens to Los Angeles and back, cameras rolled. In fact, by
the time this “band of brothers” returned to the
Classic City, Logan had over 300 hours of footage to edit into
a 90-minute documentary.
The focus of “Darius Goes West” is definitely
on DMD and accessibility issues in America. But to me, this film
is more about the joys of friendship and the power of young people
to change the world, all while having fun. When Logan and the
crew set out on their adventure, they knew it would be life changing
for Darius. I think what surprised them though, was how life
changing this journey would be for all twelve of them.
The kudos keep
coming
The impact of “Darius Goes West” on all of the young
men involved in this project has been huge. Not only has the film
played at Carnegie Hall, but the crew has traveled to film festivals
worldwide, gaining new fans at every turn. In Telluride, Colorado,
for example, Tom Shadyac (producer/director of “Bruce
Almighty,” “Ace
Ventura: Pet Detective,” and other Jim Carey flicks) was
so taken by the film that he invited Darius, his mom, and the entire
crew to Los Angeles for the world premiere of “Evan
Almighty.” At
a NASCAR event in Atlanta, Darius was the special guest of race
car legends Richard and Kyle Petty. At the prestigious Tribeca
Film Festival in New York City, Robert DeNiro stopped by Darius’ hotel
room to say hello, and Beyonce recently sent Darius a big box of
birthday gifts.
Are you dizzy yet?
Amazingly, “Darius Goes
West” has won 25 film festival
awards and been featured on Nightline, the TODAY Show, and Ellen
DeGeneres. More importantly, the movie has, to date, raised over
$750,000 for DMD research!
But from Logan’s point of view, the best is yet to come...
“Know about it”
At every film festival, teachers, principals, and school officials
have approached the crew to say how much “Darius Goes West” inspired
them. Ditto for students. At the Cleveland International Film
Festival, high school students were so inquisitive of Darius’ story
and how they could help, that their Q&A with the crew lasted
for three hours. And in Santa Barbara, the film was such a hit
among middle school English and journalism classes that these
students chose “Darius Goes West” as a theme for
their annual 60-mile bike fundraiser (subsequently donating over
$2,300 to DMD research).
Ever the education major, Logan quickly realized what an impact “Darius
Goes West” could have if the film could be shown in middle
and high schools nationwide. He reasoned that by motivating students
to become honorary “13th crew members,” a cure for
DMD would come much quicker.
This month marks the official launch of the “Darius Goes
West Know About It” program. Schools everywhere can now purchase
(for $25) a special edition of “Darius Goes West” and
gain online access to an entire curriculum that meets the national
standards. In science, for example, there is a lesson plan about
genetics, using Darius and his disease as a live example. In English,
students learn about symbolism, plot and theme and will be able
to discuss how the director and editor use these to move the movie
forward. In social studies, lesson plans focus on the disability
rights movement and explore tolerance and diversity topics. And
in math, students are challenged to calculate how long it would
take Darius’ mom, Jamie, to “walk to Atlanta!”
Students have access to their own sections on the “Know About
It” Web site. There is an interactive Q&A with Darius
and the crew. There are forums where students can discuss the film
with their peers across the country – and brainstorm ways
to raise money for DMD research. In “Brag about it,” there
are outlets for students to shine the spotlight on themselves for
helping our cause. There are also opportunities to e-mail “Big
D” himself and to win “Darius Goes West” t-shirts.
Thanks to a private grant from a huge “Darius Goes West” fan,
I have been tapped to run the “Know About It” program.
Already, over 150 schools nationwide have signed up to participate,
and that’s just through word-of-mouth advertising!
Paying it forward
DMD research is burgeoning. Indeed, scientists believe they can
zero in on a cure within a decade, maybe sooner. All that’s
lacking, they say, is sufficient funding. “Darius Goes
West” intends to fill that void via sales of DVDs ($19.99)
and the “Know About It” program, with 100% of all
proceeds going to DMD research.
In the movie, Logan points out that Darius knows a cure isn’t
likely to happen in his lifetime. And he’s come to terms
with that. In fact, Darius participated in this documentary for
reasons that were purely unselfish. Just as Logan made a promise
to Mario to look out for his little brother, this film is Darius’ way
of looking out for the next generation of boys with DMD...in essence,
his “little brothers.”
Know about it.
For more information
Visit www.dariusgoeswest.com
Facts About DMD (from Charleysfund.org,
our film’s beneficiary)
Duchenne Muscular Dystrophy is the most common fatal genetic
disorder to affect children around the world. Children with DMD
cannot produce dystrophin, a protein necessary for muscle strength
and function. As a result, every skeletal muscle in the body
deteriorates. Although Duchenne is the most common fatal genetic
disorder to affect children, there is no cure.
- DMD has a 100% fatality rate.
- Most DMD kids die in their late teens or early twenties.
- Most boys with DMD are in a wheelchair, most between 10-12
years old.
- DMD is associated with respiratory failure, heart
failure, and debilitating orthopedic complications.
- Approximately
one in 3,500 boys is born with DMD.
- An estimated 15,000-20,000
children in America are afflicted.
- DMD affects boys of every ethnicity and geographic location.
- One
third of all DMD cases are the result of random in utero mutation,
with no warning before the affected baby is born.
Barbara Smalley is the mother of director
Logan and crew member Ben. She enjoys her work behind the scenes
for “Darius Goes
West” and “Know About It.”<
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