Teen with muscular distrophy to travel to Ukraine for therapy

NICHOLS, Iowa — A boy battling Duchenne muscular dystrophy in this small Muscatine County town will travel more than 5,000 miles across the ocean to fight the disease.

For a week in August, Myles Cook, 16, and his mother, Glenda, will travel to Kiev, Ukraine, to visit the EmCell Clinic for a treatment that isn’t available in the United States — stem cell therapy.

In stem cell treatments, the cells go to work to build and repair a damaged body. The treatments are noninvasive and do not require any immune-suppressing medicine.

“There haven’t been any naysayers in the community,” Glenda Cook said. “The community is supporting his decision.”

Duchenne muscular dystrophy is a degenerative muscle disease that causes difficulty breathing and walking. It’s the most common, and most fatal, form of muscular dystrophy. It affects 1 in 3,500 male children.

His treatment now includes steroid therapy two to three times a day, good nutrition and a good attitude. However, steroid therapy comes with side effects. Myles and his mother noticed that children taking the therapy were sluggish and heavy after starting the treatment.

“We didn’t see the plus side of the steroid therapy,” she said.

Through researching his disease, Myles found the clinic and the possibility of prolonging his life.

“The pros of the (stem cell) treatment are no cancer cells, some mobility gained and little to no side-effects,” Myles said. “The con is a big risk with maybe no reward.”

Joe Maerzke, the EmCell liaison between the Cook family and the clinic, said the stem cell treatments are natural and generative medicine.

Once the family sent over Myles’ medical records, the clinic accepted him and believed he would benefit from the stem cell therapy. In an attempt to raise awareness of the disease and the clinic, Myles will become a goodwill ambassador when he gets back home.

“I’m excited about that, but also nervous at the same time,” Myles said.

In school, Myles excels in his classes and he tries to live the life of a normal teenager.

Being confined to a wheelchair puts a strain on where he can go and who he can go out with.

“It’s just a hassle to hang out with friends,” Myles said.

So far, the community of 400 residents has raised about $5,000 for the family, and another $15,000 is needed for the trip.

The Cooks plan to hold a golf tournament Labor Day weekend and a Russian dinner in October, with details still being worked out.

In the meantime, Myles keeps up his fight against a disease that, on average, claims those afflicted with it by their middle to late 20s.

“Myles has a lot more fight in him,” his mother says.