Mom tackles 200-mile bike trip for love

Pamela McLoughlin

Apr. 13, 2009 (McClatchy-Tribune Regional News delivered by Newstex) -- Mary Caruso says she was more than a little nervous when she set out on a 200-mile bicycle trip to raise money and awareness of a progressive neurological disease that has robbed her two collegeage daughters of muscle strength and coordination.

But the 52-year-old mom is happy to report, "I did it, I'm back and I'm alive."

Caruso faced some of her biggest fears: flying, bicycling, helmets and traffic to fly out to Oregon and from there pedal to Seattle as part of an organized fundraiser, Ride Ataxia 3, in which 66 people made the four-day ride to a fitting destination, the National Ataxia Foundation conference.

Caruso raised $5,000 on her own, and passed out hundreds of paper hearts with positive messages along the way. As a group, more than $230,000 was raised.

It was all for the love of her two daughters, Sam Bode, 22, and Alex Bode, 18, both students at Southern Connecticut State University who suffer from Friedreich's ataxia, a rare genetic neurological disease that causes lack of coordination, muscle weakness, slurred speech, excessive fatigue, heart problems and more, while mental abilities remain intact.

The disease affects about 7,000 people nationwide.

The two young women were diagnosed at about age 8 and have been using wheelchairs for many years.

Caruso said she took on the challenge because she wanted to feel what it was like to wake up every day being challenged as her daughters are every day.

Sam Bode said that gesture touched her, and that when her mom was gone, the mother/daughter roles were flipflopped because she and her sister worried daily about Caruso being hydrated and staying uninjured.

Sam Bode said she now realizes what her mother goes through every day worrying about her.

"I think (the trip) was very emotional and showed her true strength," Sam Bode said.

Caruso said she couldn't come close to what her daughters face, as physically getting out of the bed each morning is a challenge for them, but she feels that she at least got "a taste of true challenge."

"I'm very proud that she did this for me and very happy that she enjoyed it," Alex Bode said.

Three out of the four days, it was pouring rain and by the end of the ride, Caruso was soaked to the bone. The first day was 60 miles and, after 52 miles and several flat tires caused by a gravelly road, Caruso was picked up. On the third day, they were slated to go 68 miles, but she made 54. She took three falls, as there were obstacles, including railroad tracks that were tricky to navigate and at one point, a 21 percent grade hill she walked up, pushing the bike. At that point, she was reminded of other's challenges again when an ataxia sufferer on a trike started rolling down the hill and she stopped it, as did others.

Many times, she was "afraid, tired, sopping wet," and cried. The girls downloaded music on her iPod for the ride, but she quickly found listening to music wasn't going to work.

She remembers a really tough ride on a road with heavy tandem logging truck traffic and a drop off on the other side of 20 feet with no guardrails. A fellow cyclist talked Caruso through it, saying, " Don't stop pedaling, keep on track. Keep on going."

But while she felt terror along the way, Caruso also was struck positively by the group camaraderie. "It was a real good feeling."

Caruso in 1998 helped found Friedreich's Ataxia Research Alliance, a nonprofit organization promoting research for treatments or cure. She holds a local fundraiser for the cause every year.

Caruso's daughters, who live on campus and return home to North Branford on weekends, help their mother with her work to raise research money and awareness of the disease.

Caruso, who wasn't a bicyclist until now, lost 22 pounds from September, when she began training for the trip, to mid-March, when she left. She lost five more pounds on the road.

To find out more about the trip or follow the inspirational heart campaign, visit Caruso's blog at www.openyourheartmarycaruso.info.

For more about Friedreich's ataxia, or to contribute money, visit www.frda.org.

Newstex ID: KRTB-0141-34101633