There are a number of words that could be used to describe Myles Cook, but hopeless isn’t one of them. At only 16, the West Liberty High School student lives with a countdown ticking in the back of his mind and he believes his time is running out. 

When Myles was just 6 years old, he began feeling tired. Long walks would wear him down and he became breathless a little quicker than the other kids. 

“Lots of things led to the diagnosis,” said Myles’s mother, Glenda. 

First, there were the blood tests. 

“There’s an enzyme in your blood called creatine kinase,” explained Glenda. “It should be at around 200. Myles’s CK levels were at 20,000.” 

Then there was DNA testing and a muscle biopsy, during which doctors removed part of Myles’s thigh muscle. After nine months, Myles was finally diagnosed with Duchenne muscular dystrophy (DMD). 

DMD is the most common, and the most fatal, form of muscular dystrophy, affecting 1 in 3,500 male children. According to the Muscular Dystrophy Association, it is a genetic disorder caused by the absence of dystrophin, a protein that keeps muscle cells intact. DMD affects the heart and lungs and children with DMD rapidly deteriorate. With a life expectancy of mid- to late-20s, Myles knows his clock is ticking. 

“When I was about 10, it started getting harder to move around,” Myles remembered. “It was harder to go up steps, getting up off the floor, getting out of bed.” 

In sixth grade, Myles went from walking to a wheel chair. 

“I started falling and was short of breath. I got fatigued really easily,” he said. 

At first, the wheelchair stayed at school and Myles used it to conserve energy. When he reached seventh grade, he depended on the chair more and more. 

“I got a lot of questions from the other kids,” he said. “I can’t do much with my friends anymore.” 

Myles is now nearly wheelchair-bound. He can still walk short distances, and he was even able to lift his foot over the lip of the shower last week. Though this is more than what most Duchenne kids can do at his age, Myles and Glenda still know what it means. 

“This disease holds him prisoner. His friends can’t just come and pick him up and go to the mall. There are a lot of social barriers,” Glenda said. She said Myles’s disability defines him. “First people see the chair, then they see him. They question his intelligence. Plus, he’s a black kid with white parents. It’s already hard enough for him.” 

When Myles was younger, his friend’s father was strong enough to carry him up and down the steps, but now, at 16, it’s getting harder for even the strongest dads to help. 

There is no cure for DMD and treatments are limited. 

“We learn physical therapy, and it ends up being home therapy because it’s forever,” Glenda said. “A family member stretches him three to four times a day, or when he requests it.” 

Glenda, a massage therapist in Nichols, knows about muscles and the importance of keeping Myles in the best shape possible. 

“We’ve been to the homes of other Duchenne boys and these kids are sometimes lying on the floor,” said Glenda. “The parents don’t stretch them, they don’t do anything. They’ve given up.” 

Myles hasn’t given up, though. At only 8 years old, Myles refused to take the steroid therapy, the only therapy offered in the United States. 

“It helps for a little bit, but then you get fat,” he said. 

Myles visits a neurologist and a cardiologist twice a year. They check for muscle strength and perform other tests to ensure his heart and lungs are still working properly. Sometimes he is prescribed a beta blocker so his heart doesn’t have to work so hard.

But none of these treatments are helping to prolong Myles’s life, which is what he wants. 

“We toured the University of Iowa muscular dystrophy research lab,” said Glenda. “They work 365 days a year, 24 hours a day.” 

Despite all that work, scientists and doctors in the U.S. seem to be no closer to finding a cure, or even a treatment for muscular dystrophy. 

“There were some promising studies in Canada, but they fell through because of side-effects,” Glenda explained. “Nose bleeds. The side-effects that shut down the study were nose bleeds.” 

Uncertain Alternatives 

Glenda is frustrated. So is Myles. 

“We’re in the storm now,” said Glenda. “We’re not forecasting it. We’re living it.” 

Myles and Glenda have given up on the United States to find a way to save Myles’s life. They have turned their backs on the Muscular Dystrophy Association. Myles said he’s not like those kids and he won’t go to the camps. He said those are the kids who have given up hope. Myles isn’t like that at all. 

So the family has looked toward alternative treatments for Myles’s condition. With massage, supplements, proper diet and chiropractic care, Myles has surpassed the average DMD child. It’s not enough, though. 

“You’re presented with a fatal disease and your doctor can’t look you in the eye and tell you other countries are doing these things with stem cells,” Glenda said, trailing off, her frustration visible. “When we received the final diagnosis, Mark and I said, ‘What do we do now?’ The doctor told us, ‘Walk out the hospital doors and continue to live your life.’ Myles is too stubborn for that.” 

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