For the most part, the Barnes family appeared to be a typical American family sitting down for lunch during their summer travels Monday at a Hays dining spot near Interstate 70.
Oldest son Noah, 11, was playing a game on a phone and admitted to being a bit grouchy with his 4-year-old sister, Angela, because she kept getting into his stuff. Angela bounced around in her seat or in the shopping cart, and middle child Jonathan, 8, was mostly quiet as dad Robert did most of the talking with a visitor. And mom Joanne tried to get in bites of her flatbread sandwich when she wasn’t making sure the kids ate.
But the yellow safety vests Noah and Robert wore, emblazoned with “Noah’s March,” is a tip they aren’t a typical family on summer vacation.
The Barnes family, especially Noah, is bound and determined to help find a cure for Type 1 diabetes, which Noah was diagnosed with when he was 16 months old. To that end, Noah and his dad are walking 4,000 miles across the country to raise funds and awareness for research.
The walk started Jan. 1 in Key West, Fla., a little more than 200 miles southwest of the family’s West Palm Beach, Fla., home. They plan to be in Blaine, Wash., the northwestern-most town in the lower 48 states, on Nov. 4, approximately 10 days before World Diabetes Day.
The idea was all Noah’s.
Noah, who was then 10, came across an article about a diabetes walk fundraiser.
“I asked my dad, ‘Can I walk to there and be cured?’ That’s not how it works,” Noah said.
Robert explained about fundraising, and Noah asked if they could do something. Robert thought that would mean a 5K run.
A few weeks later, though, Noah saw a documentary about Terry Fox, a Canadian who lost his leg to cancer but started a run across Canada in 1980 to raise money for cancer research. Noah asked his dad about walking across America.
“He pestered me for about a week. And he asked me, ‘Don’t you want me to be cured?’ How do I reply to that?” Robert said.
He knew it would be tough and wanted to show that to Noah. So they went to the beaches near their home and started walking, up to 12 miles a day in the sand, 95 degree temperatures and 50-percent to 60-percent humidity.
“If you can endure this, you can endure Kansas, because Kansas will be the hardest spot, weather-wise. And it’s going to be 400 miles of this,” Robert said.
He kept pushing his son — Are you hot? Are you tired? Do you want to quit?
Even after a month, the answer to the last question was always “no.”
Convincing Joanna was another obstacle. To make the walk, Robert would have to give up his six-figure middle management job and the promotion he was up for, and the family would have to give up their home and live on the road.
“He said, ‘We’re doing it with or without you,’ ” Joanna recalled.
“I told myself you only live once. This will be the most significant thing you’ve done other than give birth to three children,” she said.
“I had to tell myself that a lot,” she added with a laugh.
But the people they have met along the way convinced her of the potential they have to help others. They said they have seen Noah connect with people and transform them, from their first night on the road when Noah and Robert were invited to stay at what turned out to be a halfway house for men released from prison. The next night, the men all chipped in to get them a hotel room.
“You could see the guys’ demeanor was totally different. Here’s a kid who’s innocent, who wants to do something for people other than himself. These guys had been in self-preservation mode for years,” Robert said.
“People have met my son. I’ve watched them cry because he’s inspirational,” to them, Joanna said. “It’s just a reminder it’s not about me; it’s bigger than all of us.”
They hope it’s a transformation that happens with everyone they meet, from everyday people to the researchers to politicians, Robert said.
They hope Noah can become a face for diabetes research, Robert said, because funding for medical research is a “broken system.” He talks at length about the frustration of trying to meet with companies that conduct research but said they were too busy, of the marketing practices for medical research that have some diseases overfunded with unnecessary duplication of research while other diseases struggle with funding and attention, and the politicians who are too focused on the next elections.
When they reach the northwest corner of Washington, the effort is far from over, Robert and Joanna said. They plan on taking their story to Los Angeles for media exposure leading up to World Diabetes Day on Nov. 14. They’ve already been in contact with “The Ellen DeGeneres Show.”
Afterward, Robert and Noah will head back to Florida with a group of cyclists across the southern United States riding for various causes.
And then next year, they will follow their diagonal route again — this time driving — to see if they truly made a difference and to connect people they met along the way.
“We’re going to do organized events. There are health industry people who want to help, but they don’t know who to connect with in the communities,” Robert said.
Robert and Joanna said they have likewise found many people in their travels who want to help but don’t know where to start or are afraid to get outside their comfort zone.
“I would say 99 percent of the people are good people. They want to do something good, they just don’t know how,” Robert said.
“If people want to find something they want to get involved with, and they can only spend an hour or two a month just helping something they felt in their heart was important, that would totally shift the dynamic of everything that’s going on in America,” he said.
“Age is not a disqualifier,” he said, looking at his son. “If you want to do something, go do something.”
The next day — Independence Day — Noah and his dad set out again to do something, a mile at a time — 2,130 miles down, 1,870 to go.