Three years ago today, Jason and Tammi Carr’s lives changed forever. It was diagnosis day — “D-Day” — when their son, Chad, would be diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), three days before his fourth birthday.
“It can happen in an instant,” said Tammi in front of more than 1,000 people at The ChadTough Foundation’s 4th Annual RunTough for ChadTough event. “(It’s) nothing you ever expect and your life has changed.”
This is the second RunTough event without Chad, whose battle with DIPG ended on November 23, 2015 at the age of five. This Tuesday, September 26, Chad would have turned seven years old.
“I think about what he’d be like,” said Tammi through tears, “but I know that he is smiling down on us and he’s proud of us, so that’s very helpful.”
The Origin of RunTough
RunTough for ChadTough began in 2014 when close family friend, Mandy Tousa, had the idea for a neighborhood event. After Chad was diagnosed, she quickly shifted the event to become a fundraiser for the Carr family.
“It was freezing cold, (and Chad) did not want to be outside,” recalled Jason Carr in front of Saturday’s crowd. “So we said, ‘Okay, let’s put him up in the fire truck and let him pull the horn.’”
Chad didn’t want to pull the horn, so Jason took his hand and pulled it with him.
“When he pulls this horn — it’s loud when they pull it — about seven people jumped,” said Jason. “And he laughed — he thought it was the funniest thing in the world. After the race started, as they’re jogging by, he’s pulling and laughing.
“Then year two, he said, ‘Dad, do we get to scare people with the horn again this year?’”
Deciding who would pull the horn last year — the first without Chad — was an emotional and trying task. When the question of who Chad would want was posed to Jason and Tammi, however, the answer became crystal clear.
“We both knew,” said Jason, “’Cooper, his best buddy Cooper, that’s who Chad would pick. So it was really great to have Cooper last year and he made that really a much easier thing.”
Choosing this year’s honorary horn-puller proved to be much easier. Dr. Carl Koschmann, who made headlines last week for his DIPG-based research paper, was asked by the Carr family to start the race.
“He was a special guy to Chad, he was a special guy to our family, a special guy to the foundation,” said Jason. “He was one of the two main doctors that treated Chad that cared for him at his time at Mott along with Dr. Pat Robertson
“To go through that is just unimaginable, but to go through it and have two doctors there that you truly trust — that you believe in — I will always be grateful to Carl and Pat for that.“
Hope and Hardship
Many Michigan doctors and researchers were in attendance for Saturday’s race, something that served as a reminder for hope on the horizon for DIPG.
“I love having them here because — for me — it’s a reminder of, really, why we’re here today,” said Jason. “And that is, 1, to honor Chad on his birthday, but No. 2, we’re here to raise money (and) get it into the hands of people like this that can help us learn about this disease and help us eventually stop it.”
As doctors and researchers learn more about DIPG and how to treat it, families are unfortunately still dealing with its wrath. Tammi Carr mentioned a family in Boston battling DIPG with their son.
“I talked to his mom last night,” she said. “They’re in a hard time where the symptoms are back. She asked me, ‘Am I ever going to be happy again?’ And I said, ‘You know what? You are, you’re going to okay.’
“It’s a hard thing to comprehend, but for us happiness is here (at the race). This is happy. You guys are the reason we can be happy. These boys right here, our family, that’s how we can be happy. It’s a different kind of happiness and we know that Chad is always with us and he’s always there every day.
“But when you see all these people who have come out to do this, that’s happy. When you see these doctors who are making an impact, that’s happy. So, forever, that’s going to be our happiness now and we are so grateful to all of you that have come together to make us happy on a hard day.”
RunTough Around the World
Those who came out in support of The ChadTough Foundation spanned far beyond Saline. The Ruddy family — Amanda, Tom, and Isabella — held their own RunTough event in Grand Rapids, Mich., to honor their son, Tommy, who passed away on November 3, 2016 after an 11-week battle with DIPG.
The foundation also had 654 virtual runners around the world, with at least one runner in every state and participants in countries such as Germany, China, and Ireland.
“It’s incredible to see so much being done in the name of Chad and the foundation,” said Tammi. “Most of all, though, is the support of family, friends, community members, and the strangers who have become supporters.
“Each and every person who participates, volunteers, or donates has a special place in our hearts. We wouldn’t be where we are today without them.”