Five-year-old Chad Carr and his family fought hard, drew prayers from around the world, launched the #ChadTough hashtag on social media and created a foundation in his name. But on Monday, the little boy lost his battle with an inoperable brain tumor.
Chad, the youngest of Tammi and Jason Carr's three sons, was the grandson of former Michigan coach Lloyd Carr and Tom Curtis, the Michigan All-American defensive back (1967-1969). He passed away Monday at 1:21 p.m., exactly 15 months since his diagnosis, Tammi Carr posted on Facebook.
"#chadtough gained his angel wings today. Please pray for peace for our family," Tammi Carr wrote. "He left the earth peacefully and is now running and jumping in heaven," she wrote. "It is well with his soul."
Service details will be released later.
Chad's battle against Diffuse Intrinsic Pontine Giloma (DIPG) captured the attention of the UM community, and the power of his story and admiration for his family crossed rivalry lines. He was honored in various ways by the Michigan State and Ohio State athletic departments, most recently with helmet decals worn by the players in their game last Saturday, by strangers across the country and world and, of course, by the Carrs' close friends.
Michigan football coach Jim Harbaugh took to Twitter on Monday afternoon to pay tribute.
"Heaven gained an Angel today. #ChadTough," he wrote.
"It's incredible sadness," Harbaugh said Monday night on his radio show, "Inside Michigan Football." "I don't know if it's going to get any better any time soon. You watched his fight and his whole family's fight, the Carr and Curtis families. The sanctity of life. You saw it so much in him. He was so full of life and love. But heaven got stronger. Heaven has another angel now."
Michigan basketball coach John Beilein was visibly shaken when he opened his Monday news conference with remarks about Chad.
"So many of us know about the sad news," Beilein said. "Our condolences go out to all the Carrs. We've followed the situation so close, so many were involved … such great friend of not just Lloyd and the Carr family but Jason, Tammi and everyone. Just, it's a sad day. The positive will be the awareness of childhood brain cancer and what we can all do going forward."
Steve Hutchinson, the former Michigan and long-time NFL offensive guard, worked closely with Tammi on the annual golf tournament hosted by Hutchinson, Charles Woodson and Brian Griese at the UM Golf Course to benefit Mott Children's Hospital. Tammi previously worked in development at Mott.
Hutchinson took to Twitter on Monday to praise Tammi:
"(Tammi Carr) has devoted her entire career towards the betterment of children's health. Nothing about this is close to fair #ChadTough".
Just days before his fourth birthday, Chad was diagnosed with DIPG and a tumor located in a small area of the brain stem. The median survival time is nine months from diagnosis, and the only known treatment is radiation, which shrinks the tumor and offers temporary relief.
Almost immediately, Tammi took to Facebook and social media asking the world to pray for her son. A hashtag was created -- #ChadTough – orange "#ChadTough Pray for a Miracle" fundraising rubber wristbands became a fashion staple for those supporting their cause, and they have since formed The ChadTough Foundation (ChadTough.org) to raise awareness and funding for research for DIPG.
Support came from around the country and around the world, and Chad generated some absolutely touching moments from Michigan State and Ohio State. His parents are both Michigan graduates, Jason played quarterback for the Wolverines, and both of his grandparents have deep ties to the school. After the Michigan-Michigan State football game last season at Spartan Stadium, both bands joined together and quietly formed "#Chad Tough" on the field. And the Ohio State and Michigan men's basketball coaches joined to decorate the Carr's home for Christmas in mid-November.
All along Tammi provided photos and video of Chad and updates on his health, trips the family took and the more sobering reality of his illness and its effect on their other two sons, C.J. and Tommy, and the day-to-day of their lives as family.
MSU coach Tom Izzo offers condolences to the Carr family. Matt Charboneau, Detroit News
On Nov. 11, Tammi Carr, who said she offered the updates as a way to "vent, to ask for prayer and to help people realize the realities of pediatric cancer," shared a heartbreaking update on Facebook revealing she and her husband had made the decision to begin their son on hospice care.
"His breathing and swallowing have been getting worse not better, he can no longer walk and his speech is sporadic," she wrote. "We kept waiting to see improvement, kept waiting to see things turning around, but the reality is that they aren't."
Chad had been on an experimental drug treatment and spent considerable time at Memorial Sloan Kettering in New York as part of a clinical trial with Dr. Mark Souweidane, a Metro Detroit native who attended Michigan as an undergrad and Wayne State for medical school. Chad was on steroids, but his parents opted to take him off of them because he was always hungry but did not have the ability to eat.
"The treatments we started him on in June, they did help," Tammi wrote. "He was going downhill quickly in June and once we started the treatments, he really did get better ... and we've had another almost six months to enjoy our family. But now we believe it's time to stop fighting and to let him relax and be at peace."
Lauren Hill, a basketball player from Mount St. Joseph in Cincinnati, had DIPG and became a national inspiration. Hill, who died in April, continued to play basketball through her radiation and chemo. She raised $2.5 million last year for research, just less than the $2.7 million than had been raised for DIPG in the previous seven years.
The Carrs hope the ChadTough Foundation will continue to raise awareness and research funding to attack the DIPG tumor. Tammi Carr last summer launched a garage-sale fundraiser in their Saline neighborhood with the majority of proceeds going to the foundation. Several of her friends around the country also sponsored neighborhood garage sales to raise money.
Tammi Carr is the foundation's primary fundraiser and her husband is the president.
"We want to be part of fixing this problem," Tammi Carr told The Detroit News in June. "It's a really bad thing that's happened to our family, but we want to make the best of this. But it can't just be about Chad. We want him to get better. We want him to get his miracle, but we are committed to making sure there's a change so parents don't have to hear, 'There's really nothing we can do.'"
Souweidane began DIPG research more than 15 years ago when there was little focus on the disease. Money was not readily available for research and still isn't on the government and pharmaceutical levels, he told The News in June.
"The potential for success was worse than the disease itself," Souweidane said.
Progress is being made, he said, because of families like the Carrs, and he believes there will be a cure discovered during his lifetime. He said DIPG research is "powered by families," with about 80 percent of money for research funded by families and foundations. There are 300-350 new cases of DIPG each year.
Tammi Carr said she is devoted to the foundation and for raising funding so that research can be done to find a cure.
"We want as much good to come out of this as possible," she said last summer. "This is the hardest thing we will ever do in our lives, and that's whether he's with us or not."
In a Facebook on Sunday, Tammi Carr wrote that ESPN visited with the family last week for a feature on Chad and DIPG awareness.
"We are grateful that they are telling Chad's story and thus the story of so many other children who are fighting this terrible monster," Tammi wrote of ESPN.
She also thanked Michigan football coach Jim Harbaugh and his wife, Sarah, for flying in Dr. Issam Nemeh from Cleveland to visit with Chad on Saturday.
"He is a traditional physician who is also considered a Christian healer," she wrote. "People come from all over the country and sit for hours just to have him touch them at their healing services. Jim and Sarah made sure he came here when Chad wasn't able to travel to see him."
Tammi Carr said they had supplemented Chad's medical treatment with alternative treatments to make sure they have tried all avenues to help him.
Michigan players wrote #ChadTough on their helmets at Indiana just more than a week ago and dedicated the game to him. Many of the players had the hashtag on their helmets last Saturday at Penn State.
"We still pray for (Chad's) miracle but at the same time our prayer is now bigger than that and I ask that your prayers will also be," Tammi wrote on Sunday. "We pray that Chad is healed of course but if that is not the play, we pray that Chad does not suffer. We pray that he goes home to the (Lord) peacefully and painlessly."