Nichols family’s last hope lies in controversial, miracle treatment

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.”

Myles is not only stubborn, he’s intelligent. This combination has led him to spend hours each day researching his disease.

“Myles knows more than his doctors do about his disease,” Glenda said.

It was this research that led Myles to EmCell, a controversial clinic in Kiev, Ukraine. EmCell, run by Dr. Alexander Smikodub, provides stem cell therapy to people who, like Myles, have received little hope from mainstream medicine.

“Ever since he was diagnosed, we let him make his own decisions about what he wants to do. He did the research and brought it to the family. The decision to go ahead with it was almost immediate,” explained Glenda. “It’s an industry that’s so new but we’ve been talking to people who have gone there and had results.”

It’s also an industry that has been widely criticized by doctors and scientists around the globe. Despite claims by the clinic that stem cell therapy has led to improvements in patients with several conditions, including muscular dystrophy, diabetes and even HIV/AIDS, a lack of solid, scientific data has discredited Smikodub in the scientific community.

According to the ALS-TDF website, an investigation of EmCell was launched in the spring of 2002 by the ALS Therapy Development Foundation, an organization committed to finding a cure for Lou Gehrig’s Disease. The investigation found very little to back up the clinic’s claims. It found nothing but anecdotal evidence to support EmCell’s claims that stem cell therapy actually helped its patients. The ALS Foundation stated in its report, “We have not found any data that suggests that the methodology used by EmCell is scientifically reasonable, or that it is helping ALS patients.”

The study also showed that EmCell doesn’t actually follow up with its patients after they leave the clinic. The study found, after speaking with several patients who visited the clinic, that “EmCell does not appear to have any real tracking mechanism in place to identify improvements and declines in their patients after they have returned home.”

Other doctors have purported to offer “miracle cures” with stem cell therapy and the Cooks can spot the difference between a fraud and the real deal.

“We originally started this search with William Rader. He couldn’t give us very many answers,” Glenda said.

A report by Quackwatch entitled “The Shady Side of Embryonic Stem Cell Therapy” said Rader is an American doctor who ran a chain of eating disorder clinics in California. He now offers stem cell therapy at a clinic in the Dominican Republic.

The Cooks knew right away that Rader wasn’t being honest with them.

“He didn’t ask for any of Myles’s medical records,” Glenda explained. “He didn’t explain how he was going to isolate the stem cells that are specific to MD.”

Myles said he has done his research, though, and he’s getting answers from EmCell. He and his family have been in touch with liaisons from the clinic in Kiev.

“They’ve taken a personal interest in him. You just know it’s real,” Glenda said. “It also helps to have that inner faith that’s so strong in our family.”

Myles is staying very positive and, more important, realistic about the treatment.

“I’m going in with low expectations,” he said. “I don’t expect anything until I see it.”

“He knows and understands this isn’t a cure; it’s a treatment,” said Glenda.

They’re also preparing for the experience of being in Ukraine, formerly the largest country in the U.S.S.R.

“We’re not going to go to a clinic that looks like the University of Iowa Hospitals,” Glenda said. “When we get to Kiev, it’s going to be a culture shock. They’ve told us when we get to the clinic, the doctors don’t speak English. We’ll have an interpreter with us at all times.”

How Much Does a Miracle Cost?

They’re ready for it. Except for the cost. The cost of the treatment is $17,000. With travel expenses, the trip is not going to be cheap. The Cooks, and Myles especially, are ready to do what they need to do to raise that money. Myles, a very shy young man, is willing to face his fears of public speaking and put himself in the public eye to raise the money.

“Instead of take, take, take, he wants to give back to the community,” Glenda said. “People donate to all these benefits and fundraisers, and sometimes we don’t know what happens to the person we donated to. It’s a donor’s right to know what happens to that person.”

The Cooks will document the trip, including the treatments and his recovery. Myles will look for volunteer opportunities in the community when he returns and he’d like to write a guest column in the Index about his travels, and about just being a kid.

In the meantime, Myles is going to go on being a kid. He loves to watch movies, play XBox and draw. He’s also going to keep his head out of the clouds and try to remain realistic about the possible outcomes of the treatment.

“I’m just waiting. I want to see what happens,” he said. “I can’t get too excited because what if it doesn’t work?”

The Cooks understand the treatment may not work, or it could work miracles. It’s a risk this “warrior mom” is willing to take.

“There’s a good chance that if I do nothing, my son will be dead by the time he’s 30,” said Glenda. About EmCell she said, “I hope I’m right. I have to be right. I can’t go there with a doubt. It really upsets me to think about that.”

EmCell patient liaisons have told Myles that, if he raises enough money and receives the treatment, he will be the first American with his condition to get treatment at their clinic. A Pultizer prize-winning article by Gareth Cook at the Boston Globe tells a different story about a 15-year-old boy with DMD who sought treatment at EmCell in 2004. No matter, the patient liaison said. Myles would be the first American with DMD since EmCell began working with his company in May of this year.

Since Myles will be the first American with DMD with whom the company has worked, he will serve as a goodwill ambassador for EmCell. The Cooks are familiar with this because their oldest son, Maxx, has served as a goodwill ambassador for BioPharmaceuticals. Maxx speaks to audiences about an experimental drug that helps him manage his phenylketonuria, a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine, according to the National Center for Biotechnology Information.

Hopefully, when Myles returns, he’ll have the energy required to be a goodwill ambassador. He also hopes to have enough energy to do more of the things he enjoys doing.

“He hopes to have enough energy to do the stat work for the football games,” said Glenda. “Right now, he does some of the home games but he wants to be able to get on that bus and go to the away games with the team.”

His place on the field began one Friday night when Myles was trying to go up the ramp into the bleachers.

“He was trying to get up the ramp and nobody was moving,” Glenda said. “They wouldn’t let him through and he had to back down the ramp. Mr. [James] Laughlin ran from the other side of the bleachers and brought him onto the field and he sat with the cheerleaders.”

Things like this are not helpful, Myles said.

“It hurts morale,” he said.

Morale is important. Almost as important as hope. But Myles is a smart kid and he knows the stakes.

“If I wait too long, there’s nothing I can do after a certain time. I have to do it now,” he said. “I just wish I’d found [EmCell] sooner.”

Glenda and Myles said their family and friends have been incredibly supportive.

“I asked my two best friends what they thought and they both said, ‘That’s cool.’ They’re being really supportive,” Myles said.

They’re going to need a lot more than moral support, though. The Cooks are hoping to raise enough money to leave for Kiev by the end of this summer.