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