Double the Pleasure: Sister and Brother Team New Goodwill Ambassadors

MDA's newest Goodwill Ambassadors, Aubrey and Nick Olson, with National Chairman Jerry Lewis
by John Jennings on February 1, 1998 - 3:10pm

After half a year of tests, the Olsons suspected their younger two children had a neuromuscular disorder. Friedreich's seemed the most serious possibility, but it usually strikes people in their teens. The disease affects the peripheral nerves, causing weakness, loss of feeling, and coordination problems in the arms and legs. Eventually, it causes heart weakness.

As she tried to fathom what the doctor had said, the noise from the back seat pierced Cindy's numbed consciousness. "I realized how sweet those little voices were," she recalls. "It was like I'd never truly heard them sing. I realized just how precious our time together is. Seeing the kids' twinkly eyes and carefree lifestyle brought me the greatest joy, and I knew I wanted to be more like them."

Bruce was struck with the same realization, and by the time the Olsons reached home they were a new family with a new focus. They would enjoy life to the fullest, while pouring all of their spare time and energy into helping to find a cure for Friedreich's ataxia. The fifth member of the Olson family, Nick's and Aubrey's older sister, Brittney, now 13, is as determined and involved as her siblings and her parents. Theirs is the ultimate family project.

The first priority was learning everything they could about Friedreich's ataxia. "We found out that the gene that causes Friedreich's hadn't even been discovered," Cindy said. "We were very upset. We knew we had to speed up the process."

The bad news was quickly followed by some very good news. Friedreich's ataxia is one of the 40 neuromuscular disorders for which MDA is funding research. "When we got in touch with MDA, we finally started getting the answers we were looking for," Cindy says. "We learned about the services available to families and got the latest information about research into the disease."

Better news came in 1996, when MDA researchers found two types of mutations on a chromosome 9 gene that can lead to Friedreich's ataxia. The research is continuing.

Soon all of the Olsons were involved in various MDA fund-raising events. Aubrey, now 11, was named Minnesota's MDA Goodwill Ambassador for 1996.

The energy, attitude and charisma exhibited by both Aubrey and Nick, now 9, resulted in their joint selection as MDA's 1998 National Goodwill Ambassadors. They are the first sister and brother to serve as co-ambassadors since 1964.

Aubrey has some coordination difficulties, but gets around pretty well. Nick uses a walker at home and a wheelchair at school. He has back and leg braces.

Bruce and Cindy decided to move to a small town, where they could feel more at ease and have better access to outdoor activities. The Olsons found what they were looking for in Pine City, a town of about 2,800 residents 60 miles north of Minneapolis. Bruce is a project engineer at United Defense and Cindy is a court reporter.

The Olsons' riverside home offers opportunity for boating and bouncing along in innertubes towed in their craft's wake. Bruce says the kids think the boat has only two speeds -- "Faster!" and "FASTER!"

As the Olsons made new friends, the family's medical situation became known. Pine City opened its arms and its hearts to its newest citizens.

"When I see the Olsons, I think of joy," says the Rev. Vicki VanderVegt, associate pastor of Our Redeemer Lutheran Church in Pine City. "They are deeply rooted in their faith, and they have been very open about the situation with Aubrey and Nick. That's been helpful to everyone. Bruce and Cindy have a real concern for Brittney, that her life not be less than it should be because of all the necessary attention the other two kids get."

Aubrey's fifth-grade teacher, Julie Anderson, says Aubrey leads quietly by example. "She isn't up front making a lot of noise," Anderson says, "but she's involved in everything and always gives 200 percent. Aubrey has a lot of best friends and she brings out the best in them. When we had a community service project to do, the students wanted it to be a fund-raiser to help Aubrey fight her disease. I was so proud of those young people."

Nick's friends are apt to pop in at the Olson home after school to go riding with Nick on the family golf cart, which he loves to drive. His father made him pass a safety test before Nick was issued a family "driver's license" for the cart. "Nick has lost his license a few times," Brittney says. "He gets stuck and Dad will take the license away for a while."

Nick's aura of playfulness is apparent -- just look what happened when he met MDA National Chairman Jerry Lewis at the Labor Day Telethon last September. Recalls Cindy, "When Jerry Lewis came over to meet us, he walked up, put both hands around Nick's throat and pretended to choke him. We still laugh about it."

Lewis was impressed with Aubrey and Nick. "They won my heart as soon as I met them," he says.

Nick enjoys bugging his sisters. Notes Brittney, "When I'm trying to talk with my friends, he won't get off the phone."

Nick's pestering, though, doesn't dissuade Brittney from carrying his walker on and off the school bus every day, and helping her brother learn how to play chess. "Nick and Aubrey are doing pretty well," Brittney says, "but I'd like to see them getting better, not worse. That would be great."

Bruce and Cindy see the choice of Aubrey and Nick as MDA's National Goodwill Ambassadors as a chance to promote more research into diseases such as Friedreich's ataxia. "We are in this as a family," Bruce says, "and we want to make a difference."

Adds Cindy, "This is a wonderful opportunity to focus some attention on Friedreich's ataxia. Working on fund-raising projects is so empowering. It takes the feeling of helplessness away and makes you realize you really can be part of making important things happen."

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