Ambassador of hope

Lincoln McKinley Primary School's 9-year-old Cadence Kallenberger kicked off her Montana ambassadorship for the Muscular Dystrophy Association Monday afternoon in the school's gymnasium before a packed house of attentive and curious elementary kids.

MDA coordinator Wendy Jam started by telling everyone in the gym that her job was to "help make things easier for people with muscle diseases," like the one Cadence has.

Cadence's father, Justin, explained that Cadence has been diagnosed with a myopathy that makes it hard for her to do things like walk up the stairs or walk for long periods of time.

He said there was some back-and-forth before doctors diagnosed Cadence with the myopathy instead of a dystrophy, which means muscles continue to deteriorate in spite of any treatment. Myopathies make it possible for people to keep what they have. But it still means that if Cadence tears a muscle, it will not heal. Justin said Cadence might not always be able to walk, no matter how hard she works.

Justin and his wife, Bridget, have another daughter, Tia, 6, who also has MD. Justin said they're not sure if Tia's MD is a myopathy or a dystrophy.

Jam asked the students how they used their muscles. Answers varied: "lift up heavy rocks," "open things," "climbing," "picking up stuff" and "riding bikes" were a few. Jam told the students MD makes it hard for people like Cadence to do those things. She said there are 400 people with MD in Montana - it is a rare disease.

MDA Executive Director Jenny McGahan told everyone her job was to help raise money so Jam can spend it, referring to how MDA invests the money it raises.

According to an MDA pamphlet, every "business day" $75,000 is invested in research that will hopefully accelerate treatment and cures - Jam said MDA's number one job is to find a cure.

MDA also spends money on specialized care and providing access to care centers and clinical trials for people with MD and similar diseases. Lastly, the money goes to providing seminars, assistance with equipment and MDA Summer Camp.

Cadence told everyone about her time at MDA Summer Camp, where some of the things campers can do are go zip lining, ride horses, do arts and crafts and fish. The best part about the camp, Cadence said with a smile, was "no parents."

Cadence answered questions from the audience.

The students wanted to know about the food at camp and another asked if motorcycles could be ridden at camp, which spurred more questions about motorcycles at camp.

Jam told the curious would-be motorcycle riders that, although people at camp didn't ride motorcycles, Harley Davidson is a big sponsor of MDA and people with motorcycles have been known to come by the camp and give rides in the side car.

McGahan explained later that the students' questions were more an indicator that they perceived Cadence like other fellow students and that she wasn't worried the elementary students missed the point: the seriousness of MD.

As the Montana MDA Goodwill Ambassador, Cadence will represent kids and adults with muscular dystrophy and other similar muscle degenerative diseases by appearing all over Montana at various events. She will encourage people to support MDA by giving money and raising awareness.

The Havre Fire Department is the fourth largest MDA fundraiser in Montana, just behind the ones in Billings, Great Falls and Missoula, McGahan said. The department is number 46 in the nation when it comes to fund-raising.

Havre Fire Department firefighters presented Cadence with flowers and took pictures with her and her family.

McGahan and Jam said life expectancy for people with MD has grown exponentially in the last few years. They said the expectancy for someone like Cadence is somewhere in the 30s, but also added that there are several drugs on the verge of FDA approval that could play a major role in extending the lives of those with MD.

The Kallenbergers are optimistic. Bridget said they receive a lot of support from family. Justin said, from what they've been told, Cadence could outlive "all of us."

Above all, Justin said he and Bridget have a credo they live by and especially applies to dealing with his family's struggles.

"If you're going to worry, don't pray. And if you're going to pray, don't worry," he said.