Showing posts with label duchenne muscular dystrophy. Show all posts
Showing posts with label duchenne muscular dystrophy. Show all posts

Wednesday, July 28, 2010

Big Daddy Weems


By: Olivia Baker & Ella Sivertsen, M&M TIPsters


Darius Weems. A man on a mission: raise awareness about his condition. The 20-year-old Athens resident with Duchenne Muscular Dystrophy wants the world to know about the number one genetic killer of children in America. Duchenne Muscular Dystrophy, or DMD, is a disease that deteriorates the muscles in the body, taking the ability to walk, do basic physical activities, and eventually, the victim’s life. Darius lost his brother Mario to DMD when Mario was nineteen. For this reason, in 2005 when he was fifteen, Darius and his friends created the film Darius Goes West about his journey from Georgia to California to get his wheelchair pimped on MTV’s "Pimp My Ride."

Mario was the most significant inspiration for Darius to make the trip to California. Darius says that Mario never let DMD stop him from being joyful and moving forward. “When life got hard and my brother was still happy, and he still kept the smile on his face, it kinda makes me want to keep on living and not think about the bad things and just be happy for what I’ve got," he said. This encouragement motivates Darius to get out there and make some good out of what he has. It’s certain that Darius aspires to be like his big brother and to carry on Mario’s legacy. Now, with DGW, Darius can carry it on in a much larger impact than he thought.

“We took this trip and thought it was a silly trip for me to get out of the house and stuff and we became, like, big movie stars,” Darius said. “None of us expected it to get this big.”

Since the movie, Darius finds that he is very busy with interviews and appearances. Whether it’s a Skype chat or a TV show, Darius is constantly spreading the word. To those who want to make a difference like he does, he said, “If you have something you’re passionate about, bring it to the people. Without the people you have nothing.”

His wit and positive outlook on life help everyone, healthy and disabled, young and old, to look to the future with hope, live in the moment, and smile.

Obviously, Darius is more famous than ever. “It just feels good that I’m famous for a reason,” hesaid. “People recognize me for all the things that I’ve done.”

Darius now has many opportunities to continue the domino effect. Last year, he traveled to forty-seven out of the fifty states. He’s appeared on several television shows, including The Ellen DeGeneres Show, and has met celebrities including Kanye West, William H. Macy, Robin Williams, Ben Affleck; he’s even received a letter from Beyonce Knowles. Fame hasn’t changed him; he uses it to further DMD awareness.

Soon, in fact, he hopes to develop a rap career, using his music to earn funds for a cure. Darius started rapping at age 15 before filming Darius Goes West. Over the past five years, he has written about five studio raps, including “On a Mission” and “Momma I Made It.” His songs are inspirational because of how they pertain to what he’s been through. He has been working with a producer and has some recording equipment at home. He hopes to release an album once he has enough songs out there.

Being a rapper, Darius himself appears to have a certain swagger. On the day of the interview, he wore black jeans, a black shirt, a black hat, and a cross necklace. On a new diet plan, he’s slimmed down over the past few years. He seemed rather quiet, but conversational, and still had that good humor about him and laughed on several occasions. Darius has definitely matured even more in wisdom since he began publicizing his message on the big scale; nevertheless he is friendly and likes to smile.

About the documentary: When Darius was young and his mother told him of his condition, he didn’t understand fully at first. What it meant to him was simply that he easily suffered from fatigue and was slowly losing his ability to walk and to do strenuous activities. It didn’t get Darius down. Being confined to a wheelchair from the age of ten years didn’t change his charismatic, social personality. He enjoyed making friends in school and at his camp for those with disabilities. At camp, he was so loved by all of them that he considered himself more of a counselor than a camper. He befriends almost everyone he meets, including his “brothers”, Andrew “Corn Rows” Carson, Ben “Darius’ Little Do-boy” Smalley, Collin “Diaper Baby” Shepley, Daniel “the Crazy Driver” Epting, Dylan “the Eye” Wilson, John “T-Barn” Hadden, John “Lawn Chair” Harmon, Jason, “that Other Big Scary Guy with Long Hair” Hees, Kevin “Weird” Weir, Logan “the Boss” Smalley, and Sam “Doesn’t Have a Cool Nickname” Johnson, who went with Darius “Big Daddy” Weems on the journey of a lifetime.

Then he and his friends set off, and Darius was excited. He had never been out of his county, and now he was embarking on a trip across the country with his closest friends, to experience things and see sites he never had before. Athens let them out with style, declaring that day, July 22, the official Darius Goes West Day. Darius was fueled by his anticipation to try new things, and even when there were problems with the bus, wheelchair accessibility, and the wheelchair, he kept an open mind at all times, always with good humor and joy. He loved every event of the trip, especially the Grand Canyon. “Coming from home all the way to the Grand Canyon… it was, like, pretty emotional,” Darius says. Although MTV refused to “pimp” his wheelchair, Darius still made and makes an impact by showing the world that DMD can’t stop him from changing it.


Darius at a Glance:
Favorite city: New York City
Favorite video games: NBA2K, Call of Duty, Modern Warfare
Favorite basketball player: LeBron James
Favorite team(s): Cavaliers, but is going to change to Miami next year.
Favorite rapper: Nas
Favorite place he’s visited: Grand Canyon
Favorite food: Meat Lover’s Pizza (definitely not wasabi!)
Favorite color: Black
Favorite film: Darius Goes West!

Day in the Life of Darius Weems

By Emily Soroka, Lan'Tiqua Burks, and Damarcio McCoy, M&M TIPsters

Taking life one day at a time and never taking a day for granted, Darius Weems, a 20-year-old living with Duchenne Muscular Dystrophy (DMD), struggles with everyday tasks and depends on others.

"You can't stop yourself from coming to Earth; you can't stop yourself from leaving the Earth," Weems said.

An African-American male who is confined to his red and black power wheelchair, Weems’ most noticeable traits are his smile and happy attitude. Having a conversation with Darius you would never think that there’s anything wrong with him, but his disease takes a toll on him and the people around him. Darius tries to do some things in his own special way to be independent but he still depends on other people for a large part of his day.

Darius has a positive attitude toward life although he is living with DMD. He was diagnosed at age 5, and his brother Mario died of the same disease at 19 years old. Duchenne Muscular Dystrophy is the number one genetic killer of children and one in every 3500 has the disease. Victims typically lose the ability to walk by the age of 10 and the disease is 100 percent fatal.

According to Darius, wheelchair accessibility, or lack thereof, is his “biggest challenge.”One of the many things Darius has to deal with on a daily basis is non-accessible locations. He goes to places that are not wheelchair accessible to try to raise awareness of the situation.

“I like to go to places that are not accessible, so maybe if they see me, like a person in a situation, they would change it, if they see me come there and I can’t get in there and my friends can. Maybe they would just try to change the place,” Darius said.

“Accessibility is dependent on the owner,” says Amble Johnson, who helps Darius and deals with press.

Accessibility can be a big problem for people with DMD. They need help going places if they want to leave the house, and need to get driven around. Darius’s mom is there for him to help with these things. Darius’s wheelchair constantly breaks down, which also temporarily demobilizes him.

Eric Ninden, a victim of DMD who makes YouTube videos, needed help brushing his teeth by time he was out of high school and cannot lift his hands to his ears. Darius and Eric need help from friends and family with everyday tasks that wouldn’t be thought twice about for a person without DMD.

Darius has to take six medicines daily for his heart and is currently on a low sodium diet to stay healthy. He let out a laugh when he mentioned he cheats every once in a while. Taking medicine will not cure DMD, but it will help strengthen his heart and help his body function. Eric Ninden is on a diet like Darius that consists of avoiding sugar, refined food, and dairy products; instead he eats organic food. It’s important for a person living with DMD to stay on a healthy diet so they don’t become obese and cause any more stress on the muscles.

Support from friends and family make a huge difference to the victim. It takes away worry and stress, and helps them stay happy and high in spirits.

Darius had a firsthand account with his brother’s DMD and death, allowing him to cope with his disease easily. “I just like, see my brother, all the stuff he went through made me strong and he showed me you can’t sit in one mode in life. You gotta try to make some moves,” he said.

Darius’s mom and sister are an important part of his life. They help him with daily struggles and doing everyday tasks. They can also provide support for each other. Darius says that the disease made his relationship with his mom closer. Darius works very hard to inform others of DMD and what he has been through. On a weekly basis he makes Skype calls to schools and visits students. When he was on the road traveling last year, he went to 47 states and visited two schools during the day and a venue at night.

The day in the life of Darius Weems might be difficult at times but he still has hope and keeps his spirits high. He has made a big impact and raised awareness to Duchenne Muscular Dystrophy.

“It just feel good I’m famous for a reason,” he said.

Emily Soroka, 14, is a Freshman at West Forsyth High School in Cumming, Georgia
Lan’Tiqua Burks, 15, is a Sophomore at Cascia Hall Preparatory School in Tulsa, Oklahoma
Damarcio McCoy, 15, is a Sophomore at Muscle Shoals High School in Muscle Shoals, Alabama