Chad Carr was a precious, beautiful, fun-loving boy who — on September 23, 2014 — was diagnosed with an inoperable brain tumor called diffuse intrinsic pontine glioma (DIPG). Three days later, he spent his 4th birthday in the Coach Carr Unit of Mott Children’s Hospital in Ann Arbor, Michigan. (The Coach Carr Unit is named after Chad’s grandfather, former University of Michigan football coach Lloyd Carr.)
Chad would undergo 30 rounds of radiation at Mott and then participate in a clinical trial at Memorial Sloan Kettering Cancer Center in New York. He bravely fought for 14 months before gaining his angel wings on November 23, 2015.
Within days of being diagnosed, a family friend, Michael Sydlowski, came up with the slogan “ChadTough” as a way for people to show support for Chad. Thanks to social media, word of Chad’s fight continued to spread through the Facebook page Pray for Chad Carr (now ChadTough Defeat DIPG Foundation).
Numerous stories were written about Chad early in his journey, including articles from Today and ABC News. The Ann Arbor News followed Chad throughout his fight with DIPG, and Chad even got his very own superhero theme song thanks to his friends Ariel, Zoey, & Eli. All of this has brought much-needed awareness to a truly devastating disease.
Chad’s Favorite Things
Chad loved his two older brothers, CJ and Tommy, more than anything. He selected the color orange as his favorite — the foundation’s primary color — because his brother, Tommy, said it was his favorite. Extended family meant a lot to Chad, too. His three cousins, Drew, Sydney, and Casey, were like sisters to him.
Chad always said he wanted to be an animal doctor when he grew up and carried around his two stuffed animal doggies — Barley and Frederick — everywhere he went. When he was diagnosed with DIPG, Chad’s neighbors granted him his greatest wish for his birthday: a dog! Despite protest from his family (“are you sure you want to name him that?”), Chad named his dog Tootie!
Unlike his brothers, Chad was always an eclectic eater. Some of his favorite foods included tofu, miso soup, olives, peppers, and pickles. Pizza was also at the top of his list. He enjoyed experiencing pizza in New York, but he says the best is Pizza House in Ann Arbor (bacon and olive round!).
He was a huge music lover and had great dance moves. As a child with two older brothers, Chad especially loved any song that featured the word “butt.” More of his favorite things: stickers, arts and crafts, hot tubs, shells, Paw Patrol, Blaze, “would you rather” questions, helping mommy cook, playing sports with daddy, digging for worms, his best friend Cooper, Bubba and Nini, Chuck E Cheese, and any holiday.
Why We Fight
It is important for us to remember Chad and why he was special because it pushes us to continue fighting in his honor.
The most difficult thing about DIPG is the lack of hope. Parents met with this horrific diagnosis are not provided with a standard treatment plan. Instead, they are forced to navigate the disease on their own, conducting their own research and making pivotal choices about their child’s care.
We believe Chad’s story can inspire others to give to a much-needed initiative: DIPG research. With less than 4-percent of the taxpayer-funded National Cancer Institute’s (NCI) annual budget directed toward pediatric cancer (not DIPG or pediatric brain tumors, but all pediatric cancers), family foundations must be the driving force for change.