How to help families, doctors fight against Duchenne Muscular Dystrophy

Small film with a big impact

'Darius Goes West' documents the journey of then 15-year-old Darius Weems as he leaves his home in Georgia for the first time in his life to drive cross-country.

Weems has Duchenne Muscular Dystrophy, a debilitating genetic disorder that leads to progressive muscle weakness.

“I think it’s a road trip story.  In this case a hilarious group of guys traveling from Athens all the way to California and back to try and get Darius’ wheelchair customized on pimp my ride,” said film director Logan Smalley.

“Darius’ story is a way that can make a sort of relatively unknown disease feel relatable and feel like something you can make a difference in for a lot of people.”

Since its 2006 debut, 'Darius Goes West' has been seen by more than a million people and has won 28 film festival awards. It has also raised more than $2.5 million dollars to help find a cure for Duchenne Muscular Dystrophy.

It's a small film Smalley says he never imagined could have such a big impact.

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Help Ellie Merritt raise money for 2015 Race Against Time Virtual Lap. Just click here to help defeat Duchenne: Ellie Merritt and the Race to Defeat Duchenne

 

Living with the uncertainty of Duchenne's

It's something a 15-year-old boy should never have to worry about.

“I always wake up and get surprised that I’m awake,” said Jake Jarvis.

Jarvis knows what’s happening to his body, and this huge Buckeye fan knows the reality of this cruel disease.

“I don’t really like having this disease, because I really like football and wanted to play football.”

His parents, Chad and Tracy Studebacker, remember when the doctor broke the news. “‘I wish I had better news to tell you,’ and I’ll remember that for the rest of my life,” said Chad.

That’s when they learned Jarvis was diagnosed with Duchenne Muscular Dystrophy, a disease that often turns fatal before the person turns 25.

Hope

“Each time they have a birthday, I don’t get so happy,” said Tracy Studebaker. Because each birthday that passes serves as a reminder that time is a luxury. “I just, every day, hope and pray that he lives life the way he wants it. That he doesn’t waste a minute because we just don’t know.”

They also don’t know what’s next for their 8-year-old son Noah, who also carries the genetic disease. They know it and are constantly watching for symptoms in Noah, and waiting.

“Every day, every day I wait for the bomb to drop. It’s very difficult thing for me emotionally. I see what the prognosis and what Jake has gone through, and knowing that same thing will happen, but not knowing when,” said Chad.

Today Duchenne’s is a fatal disease, but there’s hope. There’s research unfolding right now at The Ohio State University Wexner Medical Center and at Nationwide Children’s Hospital.

“We can institute treatment in newborns, and if we can institute treatment in newborn period, we can essentially wipe out the disease,” said Dr. Jerry Mendell of Nationwide Children’s Hospital.

But it’s not here yet, and parents like Chad and Tracy pray and fight for new research. “We’re hopeful. We’re always hopeful and want to raise awareness. We believe within one of both of their lifetimes that we will find a cure,” said Chad.

Jake Jarvis

Jake Jarvis won’t let Duchenne Muscular Dystrophy stop his love for the Buckeyes

There are Buckeye fans and then there's Jake Jarvis. But he's more part of the team than just a fan.

Last football season was active for Jake with the Buckeyes. It all started with "Coach to Cure M.D." then a chance to be at practice, do a coin toss and even be on the sidelines for a game. He also went to the National Championship game.

"I got a championship ring from the team," said Jake.

During the amazing experiences, a friendship developed between Jake, Coach Urban Meyer and some of the Buckeyes.

"We're so close with Jacob. He's here almost every day. The greatest gifts you have are gratitude and compassion," said Meyer.

Jake has touched their hearts, and his battle with Duchenne Muscular Dystrophy is a constant reminder to his parents, Chad and Tracy Studebaker, that time is a luxury.

And Jake has shared some amazing moments with the scarlet and gray.

Duchenne Muscular Dystrophy research happening here in central Ohio

Dr. Subha Raman is on the front lines of saving hearts.

Her latest research could change how we treat Duchenne Muscular Dystrophy patients. DMD is a genetic disorder that destroys muscles, including the heart.

Her inspiration for the research was Duchenne patient Ryan Ballou.

"When I met Ryan, we saw early signs of heart muscle damage, but the good news was his heart function was still normal," said Dr. Raman.

Dr. Raman tried a combo of two hear drugs on Ryan. Drugs that have been used to treat heart problem for years, but in her study she found they also helped prevent muscle damage in Ryan's heart.

It was a big discovery because once the heart is damaged in Duchenne patients, that's often what takes their life.

Dr. Sharon Roble worked on the research, and she says the latest research on DMD is unfolding right now. "The amount of research going on is phenomenal right here in Columbus. We're doing gene therapy. They are looking at gene therapy and I think we are on the verge of hopefully finding a cure for this."

Parents determined to find cure for DMD

Friday night NBC4 is airing “Darius Goes West.” It’s a movie that has helped raise millions for Duchenne Muscular Dystrophy.

Tracy Seckler is one of a countless number of mothers who has received the news from a doctor that their child was sick.

“Which is not something any parent should have to hear and concluded with I’m sorry there’s no treatment and there’s really nothing you can do,” said Seckler.

Seckler’s son Charley was diagnosed with Duchenne Muscular Dystrophy when he was just three.

“My first reaction was let me go under these covers and never come out but, that didn’t last very long,” she said.

Tracy and her husband Benjamin turned their grief into action towards finding new treatments and ultimately a cure.

“When we realized we really could make a difference on the timeline and the quality of the therapies that were being developed that’s when we decided to go all in,” she said.

10 years later Charley’s Fund has directed more than 30 million dollars to medical research and drug development. Money she said has been raised in part thanks to the success of “Darius Goes West.”

Watch Friday at 9

NBC4 is proud to broadcast the film, “Darius Goes West”, at 9 p.m. on Friday, September 18, 2015. This award winning documentary film, produced by Logan Smalley, is about Darius Weems, a teenager living with Duchenne Muscular Dystrophy, who journeyed 7,000 miles across the country to promote awareness of the disease and to raise money for research for a cure. Starring Darius Weems, Felicity Huffman, and William H. Macy, the film has won an extraordinary 28 film festival awards and was hand-picked by Robert DeNiro to screen at his children’s school during the Tribeca Film Festival.

“NBC4 is pleased the producers of “Darius Goes West” have made it possible to air this important documentary that focuses on the fatal disease, Duchene Muscular Dystrophy (DMD).  It is our hope that by airing this film, we’ll be shining a light on a disease that is the number one genetic killer of children in the world. Darius Weems is a heroic figure, who with the help of his friends has made a huge impact on helping find a cure from DMD” said NBC4 VP/General Manager Ken Freedman.  “In Columbus, The Ross Heart Hospital at Ohio State’s Wexner Medical Center recently completed a clinical trial testing heart drugs.  The results of the trial showed the drugs were able to slow the decline in damage to the heart muscle”, Freedman said.

All proceeds from the film go to “Charley's Fund’, named for DMD sufferer Charley Seckler, and set up as a non-profit foundation investing in scientific research to help cure DMD. The filmmakers had originally hoped the film might raise $70,000 for DMD research, but have exceeded that goal by raising more than $2 million to date.

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