There’s a man running across the country — his second time in two years — pushing a baby stroller outfitted with a large American flag.
He’s not “running for no particular reason” as Forrest Gump did. And it’s not a patriotic thing, though Noah Coughlan says he has gotten quite a reception of patriotism for the flag.
Coughlan is running 3,100 miles — about 35 miles per day for 106 days — for something you’ve likely never heard of before: Batten disease. In doing so, he’ll become the only the 27th person to run across the country twice.
Most people first learn about Batten disease when they find out their child has it. Their son or daughter who seemed healthy for years might start to experience clumsiness, vision problems and seizures. Once the child is diagnosed with the rare genetic disease, which occurs in an estimated two to four of every 100,000 births in the U.S., parents learn that their child will die.
“The diagnosis is just devastating,” Kathy Allio, a mother in California, told TheBlaze. “To find out that your child has a terminal illness…you begin the grieving process at the diagnosis.”
“The second diagnosis,” Allio continued, “is just numbing.”
That’s right — the Allios have a second child with the terminal disease.
Kathy and Joseph Allio will be married for 30 years this year. They might have learned about their likes, dislikes, common interests and familial history while they were dating, but what they wouldn’t learn until they already had already had six children is that they both had a CLN3 deletion.
“We had the same exact mutated deletion in our DNA,” Kathy Allio said.
It’s this deletion that gave the Allios a one-in-four chance of conceiving a child with Batten disease. Of their six children, they had two.
Running across the country — twice
Noah Coughlan met the Allios in his teen years, when Joseph Allio was a pastor at his church in Vacaville, Calif., about 50 miles from San Francisco. He got to know the Allio children in the church youth group.
But it wasn’t until years later that the gravity of the disease of the two sisters in the family would hit him.
Although the family had done fundraisers in the past to raise awareness for the disease — Coughlan’s sister runs a Christmas craft fundraiser as well — he had an idea two years ago that he wanted to present to the Allios.
Kathy Allio said she thought Coughlan was going to propose something like a car wash.
She remembers Coughlan, now a 26-year-old who she still pictures as a young teen, bringing a map of the United States and laying it on her coffee table two years ago.
When he told the parents of his plan to run across the country to raise awareness about the disease, she said, “there were just tears.”
Coughlan completed his first ocean-to-ocean run in July 2011 — 10 months before Catie Allio would die from Batten disease at age 22 on May 14, 2012.
Take a look at this compilation of interviews Coughlan gave while on his 2011 run:
Watch Coughlan’s home video with Catie and Annie just a few days after completing his 2011 run:
Now, Coughlan is running again.
When we spoke to Coughlan, he was in the midwest and had 40 more miles to go that day.
“I was content with my efforts,” Coughlan said of his 2011 run. “But since then, many of the children I ran for have passed. That’s what brought me to 2013.”
‘It’s not all tragedy’
“It’s a battle that you’re losing every day and you’re still going to continue to fight,” Kathy Allio said of Batten disease. “Having lost a daughter already…and we’re in the process of losing another, it can be very challenging.”
Very challenging is an understatement: According to the National Institutes of Health, the symptoms of Batten disease begin to manifest themselves in children between the ages of 5 and 10, depending on the form of neuronal ceroid lipofuscinoses (NCL) the patient has. It can start with vision problems, seizures or a loss of motor skills. Eventually, the person becomes blind, bedridden and with dementia.
By their teens or early 20s, most children with the disease die. Annie, the youngest of the Allio children, turns 15 this Friday. Kathy Allio said she is academically a 5-year-old, attends a special school and probably won’t be able to tell you at dinnertime what she ate for breakfast.
In her younger years, Annie was violent to the point where she would inflict harm upon herself and those who tried to help her. Her family eventually chose to put her on several heavy medications that Allio said “changed her quality of life.”
“She’s a very happy child now,” Allio said. Annie likes to help cook, which can mean putting chopped tomatoes into the salad and setting the table, even if it’s not quite to the standard of the etiquette books.
The family tries to make things fun for Annie too. While she can walk, she has a wheelchair for longer distances. Her mom said they call her wheelchair a “carriage” and nickname whoever has to push her “Annie’s maid in waiting.”
“Our kids are our heroes,” she said, noting how they sat at Catie’s bedside as she took her last breath and despite being in their late teens and 20s, make time to have dates and slumber parties with Annie.
Annie doesn’t know she is terminally ill, nor did Catie.
“Every family has to choose how they are going to walk through this disease,” Kathy Allio said. But it’s telling their other children that’s one of the hardest parts.
“The worst part of it is they have to do it again,” Allio said, beginning to cry as she thought of the pain her children will go through when they sit with Annie someday. “They all know they have to do it again.”
“For our family, our faith is a huge component,” Kathy Allio said. “So it’s not all tragedy. There are no words in the human language to describe what it’s like to hold my daughter as a baby in my arms only to have her die in them 22 years later.”
And there’s the toll it takes on the family: Kathy Allio said she and her husband want to be part of the 15 percent, referring to the 85 percent divorce rate of parents of children with disabilities. The Allios strive to have a different perspective.
“We would not have known the blessings that we do if it were not for Batten disease,” Allio said. “I’ve seen that it’s not for naught.”
‘Noah is one of our mountain tops’
On his first cross-country run, Coughlan had a team following him to provide food, water and shelter. This time, he’s doing it solo, stopping at cities to meet up with parents of children with Batten disease and speaking with schools and local media to get the word out.
He’s also running for 20 Watts, a nonprofit using solar and wind energy to help provide impoverished communities with clean water and sanitation in the hopes of eliminating potentially unsafe kerosene use.
Along the way on his three- to four-month-long run, he’s relying on the kindness of others for all his necessities. He said sometimes he needs to ask for help, but frequently, it’s just offered. If you come across him in the next month or so, his favorite foods are carb-heavy pizza and pasta. He also has to change his shoes every two to three weeks. Keep up to date on his relative location via his Twitter or Facebook. As of the time of this posting, he was in Iowa — only nine states to go.
When people ask what he’s running for, he simply hands them a business card with his website, Run Coast 2 Coast.
You might think Coughlan possesses something different in his DNA to allow him to run like this — Kathy Allio said she thinks so. He said he’s always been athletic, but not a long distance runner per se. And it does take a toll on him.
“It does affect me. I’m very motivated but then there is a lot on my plate. I’m running for children who there is no cure for their diseases. It’s a physical, mental and emotional strain,” he said. “Your body and mind go father and faster than you ever imagined (out here).”
Not to mention the weather. While he didn’t run through the recent Colorado flooding, Coughlan was relatively close by and said he was constantly being rained upon.
But it’s all worth it to Coughlan, because “it brings parents hope for them to see someone out there for them.”
As Kathy Allio put it, Coughlan running and spreading the word to more people about Batten disease “makes our island that much smaller.”
Another thing Allio likes to say is “our valleys are deep but our mountain tops are glorious.”
“Noah is one of our mountain tops.”
Coughlan will finish his across-country run — the equivalent of running between 90 to 95 ultra-marathons — in Boston in the first couple weeks in November.