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Our kids inspire us to fight to defeat DIPG.

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#ColtStrong
Family Partner

February 7, 2008 – November 26, 2018

Diagnosed: November 8, 2017

Written by Colt’s mom, Shannon DelVerne

Colt was truly a joy for our family! He made us laugh every day. He went through so much adversity in his short 10 years, but NEVER EVER complained or made excuses. No matter what obstacle he faced, he simply found a way to overcome it.

Colt LOVED watching animated movies and acting out his favorite lines! He LOVED music and singing karaoke along with his favorite songs! Colt holds a special place in the hearts of everyone who knew him. He loved fully and never held a grudge. He taught us to find joy in everything, no matter the circumstances, to drink life in!

How Team Colt Became a Family Partner

Colt DelVerne was just like Chad Carr; he was a fighter. Colt beat one diagnosis of brain cancer – medulloblastoma– when he was just 5 years old, and he fought against DIPG for 12 months after learning at the age of 9 that cancer had again invaded his body.

The connection between the DelVerne and Carr families began well before his DIPG diagnosis, though. It started at the University of Michigan where Jeff DelVerne was a freshman kicker for coach Lloyd Carr’s Wolverines when Jason Carr was a first-year graduate assistant coach on his father’s staff in the late 1990s. That football bond was strengthened over the years through the battles each of their families endured against pediatric cancer.

It continues with the addition of Team Colt as a ChadTough DIPG Family Partner.

“Jeff is one of those guys, for me, that when you meet him, within 5 minutes you love him. He’s such a likeable guy and fun with a lot of energy. It’s hard not to like him,” said Jason Carr. “I think Colt was in a lot of ways like his dad. He was really fun-loving, smiling, and he reminded me of Jeff.”

Colt stood out in the spotlight. Like the time he was honored in his hometown of Sylvania, Ohio, at a soccer game at Northview High School, where his uncle Mark is the varsity head coach. Colt spent an hour before the ceremony in his wheelchair, but when it came time to shine, he rose to the occasion.

“That just sums up who Colt was,” said Shannon. “When it was time to go, he wanted to get up and walk out there himself. He was a lot like his dad – he loved being the center of attention and center stage. That was a cool day.”

Shortly after Colt’s DIPG diagnosis, Jason gave Jeff a piece of advice someone had passed along to him following Chad’s diagnosis.

“I talked to Jason over the phone, and he was like, ‘This will probably be the best advice I could give to anyone: These are all crappy decisions. You’re not making a right or wrong decision with whatever you decide to do with treatment because they all pretty much go down a bad path,’” Jeff said. “Having that perspective was invaluable.”

Instead of living just a few months with DIPG, as some stats at the time suggested, the DelVernes were able to enjoy more than a year with Colt after his diagnosis. The DelVernes called Colt their “juice.” He brought them perspective on the not-so-good days.

He still does.

“Things maybe weren’t going well for him or for someone else in our family, but he would maybe provide some comedy or say something funny that would bring us back,” Jeff said. “Yeah, that thing happened today or you had a rough day at school, but it’s not the end of the world.”

Colt is missed, but he is not forgotten. He lives on in the DelVernes through Team Colt. “In the short term, what helped us was that, even though we knew a lot and the outcome wasn’t going to be good, it really did give us hope that all the stuff that The ChadTough Foundation is funding, even if that hope was a sliver, it helped us get through the tough year post-diagnosis until his death,” Shannon said. “So our focus is giving people hope and ultimately helping find a cure.”

More About Colt

Colt DelVerne and his twin sister, Emma, were born on February 7, 2008, to parents Shannon and Jeff. They joined their older brother, Drew, and older sister, Mia, to form an indelible family. Colt was diagnosed with medulloblastoma at the age of 4 and defeated that invasive brain cancer a year later. He was diagnosed with DIPG on November 8, 2017, and again battled for 12 months before earning his angel wings on November 26, 2018.

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

What is ChadTough Defeat DIPG?

Learn about our founders, mission, and impact.