Boy with type 1 diabetes walking 4,000 miles across United States to further efforts to find cure

From idahostatejournal.com

POCATELLO —An 11-year-old boy convincing his father to buy him a new set of Legos or allowing one extra hour of playtime with friends after dark can be an arduous task to accomplish.

But asking your dad to quit his job, sell or give away all your family’s belongings, including their home, and walk the longest possible distance in the contiguous United States is like the father trying to convince the same 11-year-old boy that vanilla ice cream is inferior to unsalted kale chips.

How does a father even begin to frame that conversation when his son, Noah Barnes, only has the chance to eat vanilla ice cream every so often because doctors diagnosed him with Type 1 diabetes at 16 months of age?

The short answer is he doesn’t. And the long answer is the dad, Robert Barnes, does quit his job, cash out a 401K and deplete his savings accounts. Then the family of five launches Noah’s March Foundation, a non-profit that would spur a 4,000-mile trek from Key West, Florida, to Blaine, Washington, with the intent of raising awareness and funds to eradicate Type 1 diabetes.

What started out as research for a home-school project for Noah eventually led him to a documentary about Terry Fox, who — with one leg having been amputated — embarked on an east to west cross-Canada run to raise money and awareness for cancer research. It was called the Marathon of Hope.

“Noah comes to me and says, ‘There is this walk for a cure. Can we walk and I be cured?’” Robert recalled. “And I said, ‘No they’re doing fundraising.’”

“What’s fundraising?” Noah asked.

“It’s where they raise money for research,” Robert replied.

“Well can’t you just give them the money.”

“No, I don’t have this much money,” Robert said. “But he was persistent for about a week and then he just looked at me in the eyes and said, ‘Dad, don’t you want me to be cured?’ And what do you tell your 10-year-old? ‘No son, my career is more important.’”

Both Robert and his wife, Joanne, were sceptical at first but were willing to test Noah’s physical capabilities by walking for a few hours every day on the beach near their home in Jupiter, Florida. The temperature was often 95 degrees with the humidity at 60 percent.

“I’m being really hard on him,” Robert said. “I kept asking, do you want to quit? Do you want to quit? And he was like ‘I got this.’”

After three weeks, Noah remained persistent and reached a point where he could comfortably walk 5 to 7 miles. At six weeks, Noah could walk 8 to 10 miles a day. That’s when Robert and Joanne became convinced Noah was physically ready and mentally committed to the cause.

At sunrise on Jan. 1, Noah and Robert started walking, and on Saturday the family — having already covered more than 3,000 miles — reached Pocatello on day 259 of the journey.

While Robert and Noah are physically walking, Joanne and Noah’s two younger siblings, John and Angela, follow along in the family support vehicle.

While Joanne spends her day homeschooling John, securing lodging for the night, updating social media accounts and taking care of any other details necessary to keep the family on schedule, Noah and Robert work on home school lessons as they walk.

Instead of reading a history book about the civil war, Robert and Noah have walked past roadside monuments like those found at the Battle of Chickasaw Bayou, and all the while Robert said he is grilling Noah on dates, names and statistics.

Rather than hearing a lecture from a teacher about the Lewis and Clark expedition, Robert and Noah used Meriwether Lewis’ journal as a guide while walking some of the same trails explored on the journey.

A typical day for Noah starts around 8 a.m. when he wakes up, checks his blood sugar and eats a high-protein breakfast. Noah then packs snacks and lunch for the day and works on home school lessons. At about 11 a.m., the family drives to the starting point for the day.

Over the course of the day, Robert and Noah check his blood sugar about every 90 minutes. But because of the increasing elevation, there have been points on the journey where they needed to check it every 60 minutes.

Aside from their parenting roles, Robert and Joanne have assumed the roles of Type 1 diabetes advocates, marketers, teachers and travel guides. And while Noah’s March has been the catalyst for their newly found positions, it’s only the beginning of their journey.

The family anticipates arriving in Blaine, Washington, sometime in November. From there, they will drive to Southern California, where they hope to secure any additional publicity with morning and late-night TV shows.

Then, as Noah, his siblings and his mother follow along in the family support vehicle, Robert will travel on bicycle from Los Angeles, California, back to Key West, Florida, stopping in Southern states missed along the walk.

From there, the family will drive from Key West back to Blaine, stopping along the way to greet all the strangers-turned-friends who have helped them along the way.

Robert Barnes and son Noah talk to Carol Gunter, who stopped to see how they're doing and to give a donation to Noah's March Foundation. Noah, who has type 1 diabetes, is walking across America to raise funds and awareness to help find a cure for the disease. They were walking on Old Highway 91 between Inkom and Pocatello Saturday afternoon.

But aside from those who have assisted the Barnes family during their cross-country adventure, Robert said he will also revisit the organizations and research institutes that are working toward a cure for Type 1 diabetes.

“We want to talk to the researchers that actually have a direction for a cure,” Robert said. “There are about 25 institutions that are really focused on finding a cure and I would say 10 of them really need money because they have a legitimate process.”

Robert continued, “We want to focus on getting all the diabetes groups together and find out what’s working, who’s helping and who isn’t and start moving in the same direction. All the while we are filming these researchers and asking them what has changed in a year.”

Of the nearly $32.3 billion spent annually by the National Institutes of Health to study various conditions or diseases, HIV/AIDS research receives $3 billion a year and diabetes, of all types, gets $1 billion.

“HIV affects 1.2 million people and diabetes affects 30 million people,” Robert said. “There are these glamour groups that are getting a bulk of the research. I mean, $3 billion a year goes to AIDS offshore treatments. We have a health crisis in America — aside from our health care issues that we can’t figure out — we are burning billions of dollars on someone else’s health crisis.”

Robert continued,” We want to get people held accountable. Ten percent of the population has diabetes. If we don’t get a cure in the next 30 years it will be one-third of Americans that have diabetes.”

Once the Barnes have the proper audience they want to coordinate research groups to work together. They want to hold groups who are not spending the research money acquired through fundraising campaigns accountable with the production of a documentary film that will expose who is managing their finances appropriately.

“We are going to force accountability with researchers,” Robert said. “We are going to force accountability for funding and we are going to force everybody to move in the same direction and we will legitimately have a cure in a short period of time.”

You can read more about the organization, make a donation or track Noah’s exact location at noahsmarchfoundation.org

http://www.idahostatejournal.com/news/local/boy-with-type-diabetes-walking-miles-across-united-states-to/article_e413293d-06eb-5869-832f-8c3d2f58f33d.html