HUDSON — As with many things in an increasingly digital world, it started with Facebook.
Almost a year ago, avid runner and Hudson resident Jodi Karuso saw a link in her “Marathon Maniacs” Facebook group to Whoirun4.com, an organization that matches runners to individuals with disabilities. After being matched, runners dedicate 5ks, marathons and more to their newfound friend to raise awareness, and often money, for a wide array of disabilities.
Seven months ago, Karuso met her match in 3-year-old Nevaeh — “Heaven” spelled backward — who has Down syndrome and lives in South Carolina with her foster mom Kimberly Phillips and several foster siblings. The two have since shared countless photos and videos with one another.
Karuso’s first race in Nevaeh’s name was last summer, during “The Scream,” a half-marathon in Banner Elk, N.C.. Before the race, Phillips sent Karuso a photo of little Nevaeh with notes saying “I can’t run but Jodi is going to run for me.”
“I ran the fastest I’ve ever run that day and came in second,” Karuso said. “The last half mile had me crying and thinking about that little girl.”
Karuso has since run dozens of races in Nevaeh’s name but it’s the February 15-16 “run” she most eagerly anticipated. Last weekend, starting early Saturday morning, Karuso began running from her home in Hudson to Nevaeh’s home in South Carolina, a 565-mile trek leading her across three states with a large pink teddy bear in tow for the little girl.
Karuso ran during several points of the trip, filming videos for Neveah along the way, and the rest of the trip her fiance, Gene, drove her. Beginning at 9:45 on Sunday morning, a local of “Girls On the Run” ran the final mile with her with a local motorcycle riding club in tow. Nevaeh walked the final 20 steps to meet Karuso for the first time.
“Since our match, I always write Nevaeh’s name on my leg when I run,” Karuso said. “At half marathons and marathons, spectators yell ‘Go Nevaeh!’ It makes me cry. Now I train and run for her. She can barely walk, but she carries me.”
When word got out about the run, companies reached out to Karuso for sponsorships. Glimmer Gear, a company that creates sports apparel with waterproof, heat resistant flexible LED light strips which allows athletes to be easily seen more than a 1/4 mile away while they exercise outdoors, donated running outfits to Karuso and the bear. The Marriott Hotel in Spartanburg donated her room and meals.
“It’s overwhelming,” Karuso said. She describes Phillips as a loving mother with seven foster children, five of which have disabilities, and three biological children. She advocates for awareness and inclusion for children with disabilities.
People can be hard on children with Down’s syndrome and other developmental issues, Phillips said. “Jodi and all the people who run for her give us hope. They give us support and inspiration we haven’t found before.”
Karuso is also inspired by Phillips commitment to her children.
“I don’t have kids. I’m not married. I don’t even have a pet,” Karuso said. “I still can’t keep up with that woman.”
Karuso’s runs for Nevaeh help raise awareness about Down Syndrome and debunk myths about the disease, which affects about 1 in every 700 babies. More than 6,000 babies are born with Down Syndrome in the U.S. each year. It is estimated that there are more than 400,000 individuals with Down Syndrome in the US, according to the National Down Syndrome Society.
Karuso , who founded the Bay Area Runner’s Club has also raised thousands of dollars for charity via a race she founded: The Race To Jodi’s House. This year, she will dedicate her fundraising for The Race to Jodi’s House to Down syndrome.
“I don’t run for me anymore; I run for her,” Karuso said. She’s rallied up the troops and now 50 other runners race in Nevaeh’s name, too.
The dental assistant and COR Total Fitness instructor has run more than 200 races and will continue to run in Nevaeh’s name.
This summer, she and Gene will be married atop a glacier in Alaska. Karuso will be in her wedding dress and running shoes, with Nevaeh’s name written up her thigh underneath a garter before running a race there and then hopping a plane to run one in Hawaii.
“I am so blessed,” Karuso said. “And God bless the Facebook.”
You can reach Daylina at firstname.lastname@example.org or (727) 815-1067. Follow her on Twitter @DaylinaMiller