ANNOUNCEMENT FEATURE OF TEAM COLT
Born: February 7, 2008
Diagnosed: November 8, 2017
Died: November 26, 2018
– Funny – Independent – Curious – Loving – Tenacious –
Mom, Shannon, describes Colt as a kid who: “loves to watch YouTube Videos of his favorite movie songs and sing and dance along! He loves to put on a show for everyone in the house and be center of attention!”
Mom (Shannon), Dad (Jeff), brother, Drew, sister, Mia, and twin sister, Emma, want others to know Colt’s story because “his life matters! We need to do more to fight this monster DIPG. It is not just a statistic or a number, but a life with meaning and he brings joy to all who meet him!”
Jeff and Shannon DelVerne are passionate about fighting Diffuse Intrinsic Pontine Glioma (DIPG). They want the families of children afflicted with this disease to someday hear a different prognosis than the one they heard when their son Colt was diagnosed in November 2017.
That’s the bottom line why the DelVerne family, which includes Colt’s twin sister, Emma, and older siblings Drew and Mia, has become a ChadTough DIPG Partner Family as Team Colt.
Colt DelVerne earned his angel wings on November 26, 2018, at the age of 10. His passing followed a year-long battle with the pediatric brain cancer that is the most common brain stem tumor among children under the age of 15, according to DIPG.org, a research network devoted to providing information on DIPG research, treatment, and prognosis.
“We’ve been passionate about wanting to tell the story and raise awareness and funds for DIPG research,” Shannon said. “Our goal is to have families one day get a very different message than we got because no one should have to go through that. It’s horrible, absolutely horrible, to get the news that your son is going to die, and it’s horrible to watch them have to go through that and suffer.
“It would be absolutely amazing to one day have families get a very different picture.”
ChadTough DIPG Partner Families are parents and siblings of children who have fought DIPG and who would like to direct fundraising efforts to research through The ChadTough Foundation.
The ChadTough Foundation, including its partners, raised more than $2.5 million in 2018 and has granted over $4.2 million in DIPG research since its inception in 2016.
Team Colt is the latest DIPG Partner Family to join ChadTough.
“A kid like Colt who is ingrained in their community in Sylvania, Ohio, he’s got a lot of friends and family who would want to help and do it in his name, so this allows them to have an avenue to fund research without going through all the things you’ve got to go through to run a foundation,” said Jason Carr, co-founder of The ChadTough Foundation.
Jason Carr was a former graduate assistant coach under his father, Lloyd Carr, at the University of Michigan in the late 1990s when Jeff DelVerne was a freshman kicker for the Wolverines. He and Jeff quickly became friends, and that bond has grown stronger over the years. The coincidental fact that their sons would one day share in the fight against a dreaded disease makes that bond even stronger.
“You start reading the statistics, and these kids have passed away within 2 to 4 months,” said Jeff DelVerne. “What The ChadTough Foundation has really done is provide hope and options.
“What The ChadTough Foundation did with all it’s hard work, we were able to get 7 awesome months where we didn’t even know he was sick. We went to California, we did this, we did that. Our kids and our family look back at that as a Golden Era for us, those 7 months.”
Colt was a fighter his entire life. He was diagnosed with another brain cancer, medulloblastoma, at the age of 4 but was in remission from that disease a year later.
The DelVernes have a simple goal: progress that will one day lead to a cure for DIPG.
“Our goal would be in the next year to provide a family 9 or 10 months, and then in 2 years we’re able to provide 14 months, and in 3 years provide 24 months,” Jeff said. “When you’re talking months you say, “well, that’s not that valuable,” but taking us from 3 to 7 months, in our mind, it’s invaluable.
“Our goal is to be a part of that so that the next family gets 9 months instead of 7. That’s been our calling card to get into this.”