Strength in the face of the unknown

Before they learned their daughters had a muscle disease, the Kallenbergers had never known anyone with muscular dystrophy.

They had no clue how drastically it would alter their active lifestyle, or that the experts themselves are oftentimes in the dark about the different kinds of MD.

Justin and Bridget Kallenberger have two daughters, 9-year-old Cadence and 6-year-old Tia. Both girls have a form of muscular dystrophy. No one knows for sure if it will get worse. There is nothing to suggest their conditions can be improved. And no expert has been able to tell the Kallenbergers if the girls' disease will spread and affect vital organs such as their hearts.

What they do know, doctors and the Kallenbergers, is that Cadence and Tia have a myopathy, a form of muscular dystrophy that means it may be possible to keep the strength they have. But even with that, a torn muscle cannot heal.

Bridget likens the various forms of muscular dystrophy to a tree trunk with many branches. Each branch, with its offshoots, represents its own family or form of muscular dystrophy, and many muscular dystrophy branches are positioned in the shade of the unknown.

And although the Kallenberger girls have myopathies, there is still no certainty.

"What we have seen thus far, for them, at least, is that they have not deteriorated," Bridget said in an interview Thursday. "So it's kind of steady, where they are functioning is where they have been. Of course, as they continue to grow and get taller and gain weight, things adjust a little bit for them. ... None of us really know what lies ahead."

By the time Cadence was 1, the Kallenbergers noticed that she wasn't walking like a 1-year-old should. From then on, it took four years of doctor visits and tests to come "close" to a diagnosis, Bridget said.

The muscle disease affects all the girls' muscles.

"I always say, it's the equivalent of you've worked all day on your feet, and you come home and you finally sit down on your couch, and you're like, 'Oh my gosh, this feels so good.' And then you're like, 'Oh, I left my glass of water in the kitchen.' But you're so tired you skip getting the water - because it feels so good to sit down," she said. "They feel like that, and it could be 10 o'clock in the morning. It just takes a lot more energy for them to complete things that oftentimes we take for granted."

Justin and Bridget like to talk about people's generosity. They agree that it's people's generosity, and the community's support, that help them stay upbeat and hopeful.

"We are more than blessed with amazing friends and family and a community. It's always overwhelmed me how supportive people have been," Bridget said. "Even this week, it's the different businesses that are supporting through (Muscular Dystrophy Association). Cadence has went personally and thanked all of them this week."

The Kallenbergers smile a lot and Bridget breaks out into laughter often, usually after she cracks a joke. She sometimes makes lighthearted comments while talking about the serious condition of her children.

The Havre firefighters annual Fill the Boot MDA fundraiser took place Friday. From 8 a.m. to 5 p.m., local firefighters stood in the middle of First Street to raise money for MDA. All day, cars stopped to put money into large boots made for firefighters.

Fill the Boot partners with MDA to make it possible for children like Cadence and Tia to experience things they usually don't.

"The kids get to attend the muscular dystrophy kids camp every year - a weeklong event where kids can go and they have a chaperone with them, or a counselor, that helps them do all the activities they want to do. It really helps them to live unlimited," Bridget said.

The camps provide kids, many of whom are in wheelchairs, with the opportunity to experience things like zip lining, archery and swimming.

"Kids with muscular dystrophy love to go swimming because they are weightless - they don't have gravity pulling down on them," Bridget said. "My oldest daughter loves to lift her sister in the water because that's the only time she can lift."

Firefighters weren't the only ones getting the boots filled.

Bridget and Justin made sure Cadence and Tia contributed to the cause. They were going to be just as cruel to their kids as every other parent who put their kids to work, Bridget said, laughing.

The lesson is not lost on Cadence.

"Always step out of your bubble," Cadence said, after her mother asked what was one of the mantras her parents liked to emphasize.

Cadence is the Montana ambassador for MDA, and she said jokingly that she steps out of her bubble "too much," referring to the talks she gives as she travels the state to raise awareness of MD.

By 3:30 p.m. Friday, both Cadence and Tia, together with their friends Adisyn and Tahlyn Olson, were out in the middle of First Street, helping firefighters including Justin, who is a firefighter with the Bear Paw Volunteer Fire Department, raise money for MDA.

Tia, for most of the time was on her father's shoulders. Cadence, wearing boots that crawled up to her knees, was in the turning lane with Havre firefighter DJ Olson nearby. The sky had turned overcast and the wind had picked up significantly. Cadence and Tia soon took a sitting and milkshake break.

Tia was resting next to her mother. Bridget said Tia wants to live where she can wear dresses all the time. When asked what she was raising money for, Tia said it was for a trip to Hawaii. She wanted to go to Hawaii.

Fill the Boot has given Justin a cache of anecdotes.

Four ears of corn were sitting, next to the bottles of water, on the sidewalk bench where firefighters had put some of their things Friday. The corn, Justin said, was donated earlier in the day by a local.

"Oh, yeah. We'll eat it," he said.

All day, cars had been stopping, giving everything from $1 bills to change to twenties and even a $100 bill. Justin said Canadians drove through galore, asking if he took Canadian money. He assured them all Canadian dollars were welcome, as they could be converted.

The most anyone gave Friday, Justin said, was a $500 check. He said that's the most he'd ever received.

But the event is not just about the money.

Earlier in the day, a car stopped and the person inside asked Justin what he was raising money for. After telling him, Justin said, the man told him he had recently been diagnosed with muscular dystrophy. Justin said the man told him he couldn't jump, run or climb stairs anymore. He had been a plumber, but it became too physically demanding. The man was devastated, Justin said. After pulling into a Fourth Avenue parking lot, the two talked, and before departing, Justin said he put him in touch with a woman who works for the MDA office in Billings.

People like that are why MDA exists, Justin said.

Olson, who is president of the firefighters union, said he is proud that the Havre department is fourth in fundraising in Montana, only behind the larger departments in Billings, Great Falls and Missoula. Last year, the department raised a record $13,356.

This year, Olson said he didn't have the exact numbers, but by Friday evening it was clear the record had been broken again. After collecting the money from the businesses that had contributed throughout the week - Pizza Hut, Dominoes, Murphy's and Triple Dog Brewing - Olson said the department had raised more than $14,000. Earlier in the day, while out on First Street, he said the giving was "nonstop."

In addition to the camps it makes possible for kids like Cadence and Tia to attend, MDA also puts money into research, the kind of research that gives the Kallenbergers hope.

"That's why we are part of clinical trials," Bridget said. "And the hope, really, is finding a cure - that some day, this will be something of the past."