Community helps Jackson family with two cases of muscular dystrophy

What is a mom supposed to do when she finds out not one, but two, of her three young boys are suffering from an especially aggressive form of muscular dystrophy?

"We just live like it's not happening, even though it is," said Erin Boyer, whose oldest son, 6-year-old Frankie, was diagnosed with the incurable genetic disease in May, just a few months before the baby of the family, 1-year-old Jaxson, received his diagnosis.

But just because the family is moving on doesn't mean the news didn't hit her and her husband like a freight train.

"Terror. Shock. Sadness. Anger. All the emotions you could imagine ..." she said.

Luckily, 4-year-old Colton tested negative for the disease.

"Before May, I had no clue about (muscular dystrophy). I didn't even know what it was," she said.

But there's no turning back from that knowledge now.

Frankie and Jaxson have Duchenne muscular dystrophy, a progressive disorder that attacks muscle tissue all over the body. If not treated properly, the disease can leave children confined to a wheelchair by age 12 and dead by the time they're about 20.

It's caused by the absence of a protein called dystrophin that protects muscle cells and usually is passed from a mother, or carrier of the disease, to her male children, according to the Muscular Dystrophy Association.

Each child born to a carrier has a 50 percent chance of becoming symptomatic. In the case of female children, each has a 50 percent chance of becoming a carrier. Cases of female Duchenne MD are rare, however.

"Each Duchenne case is pretty different," Boyer said.

Symptoms, which usually show up between the ages of 3 and 5, include a waddling gait, enlarged calves, muscle weakness, frequent falls and difficulty raising the arms.

If the disease is caught early enough, it can be managed with steroids, leg braces and other treatments, and patients can live at least until they're in their 20s and 30s, sometimes longer.

When the disease finally reaches its end stages, patients often die from heart or respiratory problems caused by muscle deterioration.

That's really not something Boyer wants to contemplate.

"We're hoping and praying for a cure," Boyer said.

So are the many people going out of their way to help the family raise money for the medical bills that are piling up.

On Thursday, most of the 190 students at Eagle Ridge Christian School in Cape Girardeau paid $5 apiece to dress in green so they could show support for the Boyers. The event netted $1,600.

Eagle Ridge is where Jaxson attends and where Frankie used to be enrolled before switching to Orchard Elementary School in Jackson, where the Boyers live.

Denise Gartman, a pre-K and kindergarten teacher at Eagle Ridge, has been working with the school's high school-age students on community service projects.

So when Brandi Tribout, Jaxson's teacher, approached her about helping the Boyer family, she got the children to work making signs and spreading the word about last week's green-out day.

"And that turned into them wanting to do more, and now they're doing one event a week this month," Gartman said.

Then, when fellow pre-K teacher Cathy Lewis posted about green-out day on the Eagle Ridge Facebook page, others began coming forward to help. It wasn't long before media inquiries began rolling in as well.

The fact September is Muscular Dystrophy Month served to push the momentum even further.

A carwash is planned from 3:30 to 5:30 p.m. Wednesday in the school parking lot at 4210 State Highway K. After that, a green-out volleyball game is being put together for Sept. 23 or 30.

"When there's a family in need, this is what the Bible tells us to do. We take care of each other," Lewis said.

Anyone who would like to contribute to the month-long fundraising effort is asked to call the school at (573) 339-1335.

ljones@semissourian.com

(573) 388-3652

Pertinent address:

4210 State Highway K, Cape Girardeau, Mo.