Leanne Beers: Mom with DS 'Thrives on Life'

MDA’s 2011 Personal Achievement Award recipient for Montana has Dejerine-Sottas disease, helps others with disabilities

Leanne Beers with her kids and dogs, from left: Jessica, Bailey, Patch and Thomas
Article Highlights:
  • Leanne Beers, who has Dejerine-Sottas disease, is an upbeat, multitasking mom of two who teaches others with disabilities how to be more independent. She received the 2011 Robert Ross Personal Achievement Award for Montana.
  • “We just have to do things differently,” she tells her daughter who also has DS and her son who has a heart condition.
by Richard Senti on October 3, 2011 - 3:53pm

When talking with Leanne Beers of Missoula, Mont., you can’t help thinking that this is one upbeat, optimistic woman.

“Even though you have muscular dystrophy, or any limitation for that matter,” she says, “it doesn’t mean you can’t accomplish the goals you want. You just may have to go about it differently. There’s no reason you can’t be happy and thrive on life.”

Beers family at Leanne's high school reunion
Steve, Thomas, Leanne and Jessica at Leanne's 20-year high school reunion.

This power of positive thinking is no doubt one reason the Muscular Dystrophy Association recently named Beers the recipient of its 2011 Robert Ross Personal Achievement Award for Montana.

Beers, 38, was selected for MDA’s highest achievement award in Montana for her outstanding community work on behalf of others, especially those with disabilities.

She has Dejerine-Sottas disease (DS), which causes muscle weakness and atrophy in the lower legs, forearms, feet and hands, as well as reduced muscle tone and loss of sensation in the extremities. She uses a power wheelchair for mobility.

Beers had ever-increasing mobility problems throughout her childhood and received the first of several neuromuscular disease diagnoses when she was a senior in high school. It was not until eight years later that a nerve biopsy confirmed that she had DS.

When the goin’ gets tough, go back to school

Raising two young children from a wheelchair with a muscle disease may sound overwhelming, but Beers’ reaction to her situation was to pursue a master’s degree in public relations/health communications; she received her degree from Montana State University in 2007. She currently is preparing to pursue a Ph.D. in human services next year.

“I figured, one more step — I might as well go for it,” she laughs.

Among the many hats she wears, Beers facilitates and teaches classes for adults with physical, emotional and developmental disabilities. “These are classes to help individuals become more independent,” she says. “To help them get back out there.”

Leanne with a service dog
Bailey, a Labrador retriever, is one of two service dogs Beers has trained.

At the University of Montana, Beers has taught self-esteem and safety-awareness classes for women who have been abused.

“I’ll soon be teaching another class for women with disabilities who are pregnant,” she says, “and I’ll be teaching some online classes for Baylor University in Texas as well.”

Beers’ daughter, Jessica, is 13 and her son, Thomas, is 11. Jessica also has DS, so Beers is reliving some of her childhood memories as her daughter's symptoms progress.

“She still walks, but for longer distances she fatigues real easily, so she’ll use a manual chair or power scooter,” says Beers. “She’ll have her hard days, but for the most part she’s all smiles. She’s just very independent, very confident in herself; it’s who she is and it doesn’t slow her down by any means.” Much like her mom.

Although Thomas doesn’t have a muscle disease, he does have a heart condition called long QT syndrome that requires him to have an internal defibrillator.

“It’s a compact little gadget under his left pec muscle, with wires running into his heart,” Beers says. “It’s constantly evaluating his heart, so if it’s not beating, it’ll give him a shock, just like those external paddles.” Happily, the device doesn't slow down Thomas. “He’s still very active,” says Beers.

'This is who I am'

Beers has a very practical, positive view of her family’s lifestyle, and she hopes to impart that insight to her children: “This is who I am. I can’t do anything to change my situation so I might as well make the best of it, and there’s no reason why I can’t do whatever it is I want to do. So I try to teach the kids the same thing. I don’t want to say we can’t do certain things; we just have to do them differently.”

Leanne with her daughter, Jessica, in 50s costumes
Jessica and Leanne, decked out in “Grease” gear, for a recent '50s weekend.

So how does this busy working mom of two active middle schoolers pull off this delicate balancing act? Beers gives credit to her “great support system” of family, friends and her “significant other” Steve Schmidt.

“It’s a give and take,” she says. “They’re always there if need be.”

Two other members of the family who also help out are Bailey and Patch, two Labrador retriever service dogs. Although Patch is now retired, Bailey is still very much on the clock. Both were trained by Beers in past years when she was a service dog trainer.

“I still do some training for people, but I’m not as active as before,” she says. “I do occasionally take the dogs into schools and give educational demonstrations, showing how the dogs work and how they help their owners.”

Beers is a committed and active volunteer, especially in areas that assist those with disabilities. She is on the board of directors of Summit for Independent Living, an advocacy and resource center for people with disabilities in western Montana. She also does public relations work and fundraising for an association that promotes therapeutic horseback riding for people with disabilities.

Beers is a big fan of MDA and is a hard-working volunteer for the organization. From fundraising and public relations activities to simply offering personal support for individuals and families new to the Association, she has worked tirelessly over the years.

Three cheers for summer camp!

The family celebrating son Thomas' race victory
The family celebrating Thomas’ top-20 finish (out of 500) at a local 5K race.

There’s a particularly soft spot in Beers’ heart for MDA summer camp. Every summer, daughter Jessica attends Camp Paxon, about an hour from Missoula, and loves it.

“It’s a true Montana camp with cabins by a lake, bonfires, everything you would expect. They always come home dirty, so you know they had fun,” she laughs.

In fact, Beers met her partner, Steve Schmidt, thanks to MDA summer camp. One year when she was dropping off Jessica at a local parking lot to catch the bus headed for camp, Schmidt, a Camp Paxon counselor for 28 years, was doing double duty as the bus driver. “We just instantly hit it off!” she says.

The many MDA summer camp counselors Jessica has had over the years get rave reviews from Beers: “They’re great mentors; people my daughter can look up to. She sees that there are a lot of people out there with really good hearts, who take you for who you are and rather than what you are on the outside.”

To learn about the MDA Personal Achievement Award recipient from your state, visit the PAA page.

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