The Race Against Time—The importance of community when living with a life-shortening disease…

Community sustains the Rupels whose son, Matt, suffers from Friedreich’s ataxia, a life-shortening disease that causes progressive damage to the nerves and muscles, resulting in symptoms ranging from severe muscle weakness and speech problems to aggressive curvature of the spine to serious heart problems.

 

Even before they began their fight against FA, community was important to the Rupels. Both Bart and Brenda are locals, graduates of Wilcox High School.  Their son, Matt, is a sophomore at Santa Clara High, and their daughter, Katie, is an 8^th grader at Buchser. The kids attended Washington Open, a parent-participation elementary school, and the Rupels have an extraordinary bond with those families. With both children involved in music programs, they’ve become big music boosters. Bart is the co-president of the Buchser Music Association, and Brenda plays a lead role in organizing the Buchser Music trip to Disneyland and the Santa Clara High Marching Band competition meals (two huge efforts.)

 

The Rupel home is a magnet for Matt and Katie’s friends. Brenda often jokes about setting up a special closet for friends to leave pajamas, extra toothbrushes, and a change of clothes. It’s not unusual for them to have in excess of six friends staying over on any given weekend. Matt’s friend, Katie Kusa, says, “Most of the moms in our group are like second moms to us; we can come to any of the houses and feel completely at home, especially the Rupels’.”

 

When Matt was diagnosed with Friedreich’s ataxia, friends and family were the “warm blanket” that supported the Rupels. “I needed a blanket, and I didn’t even know it, and our friends and family were it, and it has been that way ever since,” says Brenda.

 

They’d been warned that things could change for Matt as his disease progressed, that he could be shunned at school or even bullied, but his friends have never treated him differently. He’s Matt and they love him, and they know the last thing he wants is to be different or for things to change in the group. Friends, Katie Kusa and Sarah Hawley, talk over each other, describing Matt as having, “a great sense of humor, a sweetness overall.” They agree that he’s a really nice guy and a gentleman. “He’s the one with the life threatening disease, and he’s always thinking of the rest of us,” Sarah says.

 

Best friends, Ryan Voreyer and John Towers, have gone with Matt to UCLA for his regular tests with FA specialist, Dr. Susan Perlman, and Ryan waited at the hospital for Matt to come out of recovery for his back surgery two summers ago. That was the scariest time for all of them. Just a few days after Matt and his friends celebrated their 8^th grade graduation, Matt went in for surgery. “That was when we had the tears,” says long-time family friend, Judy Kusa, “the ‘What if we never see him again?’, and ‘What if he doesn’t walk?’”

 

Another big marker was when the teens met one of Matt’s FA friends who is about six years older. He was already in a wheelchair, and he struggled to communicate his thanks to all of the attendees of his annual fundraiser. It was an eloquent speech made difficult because of the deterioration of his vocal muscles. Cindy Voreyer, close family friend (and Matt’s Kindergarten teacher), remembers, “This was a real eye opener for the kids. It really hit home what this horrible disease can do. Looking at Matt now, you don’t see all of that; then you see someone just a few years older and that was something. Our group of kids were hugging Brenda. No words were spoken, but everyone realized this is what could happen to Matt.” Says Brenda Rupel, “If it weren’t for those kids and their families, I do not think we would be as emotionally healthy as we are now.”

 

At least six of these families are on the committee for the FAITH (Friedreich’s Ataxia in the Heart) event coming up on February 10th, and Matt and Katie’s friends vie to volunteer at both that event and the SOFA (Sunset on Friedreich’s Ataxia) event held each summer in the East Bay. An outpouring of community support made it possible for the Rupels to raise over $31,000  through their first ever fundraiser. They hope to raise at least $50,000 this year.

 

Brenda and Bart also derive tons of support from other families with children suffering from FA. Because this is a rare disease, families from around the world share each other’s triumphs and sorrows via e-mails and at various conferences and seminars. It is a very close knit community. The handful of FA families in the Bay Area support each other’s fundraising efforts by attending and even helping to organize the events. Bart is on the committee for the SOFA event in addition to being committee chair for his family’s own FAITH event.

 

Obviously, family plays a huge role, too. Brenda’s mom held down the fort during Matt’s surgery and recovery. Friends knew the Rupels were covered. “No one cooks like Brenda’s mom,” says Cindy Voreyer. Besides being a daily support system, all of Matt’s aunts and uncles contribute to the FAITH event: one provides the beautiful artwork for the invitations and literature, another has re-established his Millennium Funk Band to play for free at the event, yet another arranges the venue in Sunnyvale. Bart’s mom drums up silent auction items and pulls together a silent auction basket-making party. It’s a real family affair.

 

But most of all, these friends and family of all ages provide the emotional support for Bart, Brenda, Matt and Katie: the shoulder to lean on, the friend to talk to, the FA parent who knows exactly what Brenda and Bart are going through because they are going through it, too. And, likewise, the Rupels reciprocate with an abundance of friendship and love and support to all.

 

“No parent should have to go through what they’re dealing with alone,” says Dave Kusa. His wife, Judy, adds, “We’re very blessed to have the Rupels as part of our lives. If we can do anything for them, we’re there; that’s the way it is. They are such incredible people.”

 

Next week: The Race Against Time—Funding research to slow, stop and reverse a life-shortening disease

 

For more information on Friedreich’s Ataxia, the FAITH Event on February 10^th, and how you can help find a cure, e-mail Heather Ripley at MDA’s Mission Counties Chapter office: hripley@mdausa.com or call her at (408) 423-9345. Please mention FAITH.