JettRide Cyclists brighten day for St. Pius V parishioner with muscular dystrophy

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PROVIDENCE — About a dozen people traveled more than 700 miles on bicycles to take Emmet O’Rourke to a Pawtucket Red Sox game.

“It’s impressive,” O’Rourke, 27, said recently in his backyard in Providence as the teenage bicyclists and their adult companions took a break from their cross-country trip to enjoy some refreshments and ice cream.

The young bicyclists — all teenagers in high school — posed for pictures with O‘Rourke and went to St. Pius V Church and School to shower and dress before returning to take him to the PawSox game at McCoy Stadium on July 28, in which the home team notched a 6-5 victory over the Charlotte Knights.

The baseball outing was one event in a string of meetings and outings that the bicyclists experienced over a two-week journey that began in Virginia and wound through Pennsylvania, Washington, D.C., New Jersey and Rhode Island before ending July 29 in Plymouth, Massachusetts.

The bicyclists were riding to build awareness and raise funds to help fight Duchenne muscular dystrophy, a lethal genetic disorder that affects 20,000 young people in the United States. Duchenne is a progressive, life-shortening neuromuscular disease that causes the loss of muscle function and independence.

O’Rourke, whose family attends St. Pius V Church, was diagnosed with Duchenne when he was about 1 ½ years old. He has been in a wheelchair since he was ten and uses a breathing tube.

“It can be difficult, but I have a lot of support from my family and friends,” said O’Rourke, who did not let Duchenne stop him from graduating from Providence College in 2013 with a bachelor’s degree in math.

“I’ve always been pretty good at math,” said O’Rourke, who is also a devoted sports fan who roots for the Boston sports teams, especially the Red Sox, Celtics and New England Patriots.

“I try to do what everyone else does,” O’Rourke said.

The young bicyclists and their adult team leaders were riding for the Jett Foundation, a Plymouth-based nonprofit dedicated to raising awareness and helping to fight Duchenne. This was the tenth annual “JettRide,” which began July 12 in Alexandria, Virginia.

The annual cross-country bicycle tour is not only mean to spread awareness and raise money for research, but also to unite families that have loved ones with Duchenne and to inspire communities to join the riders in battling the disease.

“We’re honored to be part of what they’re doing. What they’re doing is a great thing, especially for these teenagers who have siblings or friends who have Duchenne,” said John O’Rourke, Emmet’s father.

The teenage riders either had a sibling or a close friend with Duchenne. Luke Hains, 18, from Lebanon, Pennsylvania, said he was riding for his younger brother, Levi, who is battling Duchenne.

“And for all the other families that are in the same position as my family,” Hains said.

Betsy O’Rourke, Emmet’s mother, said her family has received considerable support over the years from relatives, friends and parishioners at St. Pius V, where Emmet went to school until the second grade.

“They’ve all embraced the journey with us,” Betsy said, adding that she researched the JettRide event when first learning about it.

“We just think it’s a fantastic thing for them to do, and I’m sure it’s very helpful for the riders too as far as supporting one another and getting to meet all the families who have children with the disease,” Betsy said.

On their journey, the Jett Riders were linked with families, like the O’Rourkes, by friends and acquaintances. Anne Culpepper, a Providence resident and family friend of the O’Rourkes who herself rode two stages as a day rider with JettRide in 2015, helped to coordinate the group’s visit with Emmet.

“We’ve had some fun experiences, many times with the young people who have Duchenne,” said Gary Rice, the group’s “wheel leader” who added that the bicyclists and leaders rode about 55 miles a day and often slept at night in churches of various denominations.

Families also often hosted the group, which got to enjoy activities such as ziplining, visiting Hersheypark in Pennsylvania and going to the movies, often with the young people with Duchenne.

“The people we meet are fantastic, and the boys we meet along the way are just incredible,” said Megan Matrka, one of the group’s adult leaders.

“It’s just a really profound experience for these guys. A lot of them have siblings with Duchenne, so it’s very meaningful for them as well,” Matrka said.

The bicyclists also stopped by Washington, D.C., and met with U.S. Rep. William Keating, a Massachusetts Democrat who represents Plymouth and who Rice said has been helpful in getting certain trial drugs fast-tracked through the U.S. Food and Drug Administration.

“From dusk to dawn, we’ve been very active, getting packed, getting unpacked, eating, riding…. It’s been an awesome experience,” Hains said. “I love it.”