Two Children Died, Thousands Can Be Helped

This article is part of Times Opinion’s Holiday Giving Guide 2022. Read more about the guide in a note from Opinion’s editor, Kathleen Kingsbury.

About 10 years ago, Lloyd Carr, the former football coach for the University of Michigan, stopped by my office to bring me a football helmet.

It was maize and blue, and he had written “Go Blue!” on it. I had started as a sports reporter, but I didn’t understand what a legend this slab of a man was. He seemed fun and charming, but I had to call my football-loving sister to learn that Carr was one of the most respected college football coaches of the winningest program in college football history. The tough Tennessee native had joined the Michigan Wolverines in 1980 and led them from 1995 to 2007. Many of the guys in the bureau were awe-struck, crowding onto the couch to talk to him.

By the end of the afternoon, I was so impressed with the future College Football Hall of Famer, now 77, that we agreed to keep in touch. We emailed back and forth, until one day his emails abruptly stopped. “Hey,” I wrote to him. “What’s up? I miss talking to you.” That’s how I found out that this man, so full of verve and life, had gone into a miasma of grief.

His grandson Chad, an angelic-looking blond, had been diagnosed with an inoperable brain tumor on Sept. 23, 2014, three days before his fourth birthday. Fourteen months later he was dead, a victim of diffuse intrinsic pontine glioma.

Carr, his son Jason and his daughter-in-law Tammi started the ChadTough Foundation; so far it has financed over $20 million in research to combat D.I.P.G. The cancer is almost always fatal and 150 to 300 children get it annually in the United States alone.

Carr made his old mottos from the football field his mantra in fighting cancer: “You can’t do everything but you can do something” and “Blame no one, expect nothing, do something.”

“My entire life, from the time I was a kid, I hated losing,” Carr said when I called him on Thursday. “As a player and as a coach, anytime we lost, it was a heartbreaking loss for me, in my eyes. I thought I knew what heartbreaking was, but I didn’t. Chad’s experience has taught me. I know now.”

After Chad’s death, Tammi curled in a ball, thinking of all the things Chad loved: orange sunsets and garage sales and his older brothers. But then her son Tommy, who was 7 at the time, came into her room and called out, “Get up and make breakfast!” It was a reminder that she owed it to her two other kids to keep fighting. Tommy is now 15 and his brother C.J. is a high school junior who will be heading off to Notre Dame to play quarterback.

As they’ve grown, so has the foundation; last year, ChadTough joined forces with the Michael Mosier Defeat DIPG Foundation, becoming the ChadTough Defeat DIPG Foundation. Michael had also died of D.I.P.G. in 2015, and was just a year older than Chad.

“We just had Chad’s angel-versary and it’s like seven years has gone by in an instant, but it’s also forever,” Tammi Carr told me. “Grief is a weird thing.”

I also met Ciaran Staunton, like Lloyd Carr, before his life was wrecked. He owned two Irish bars, one in Midtown Manhattan and one in Brooklyn. I also knew his wife, Orlaith; his daughter, Kathleen; and his son, Rory, a strapping 5-foot-9, 169-pound 12-year-old.

“He fell in school,” Staunton said, recalling a Tuesday in March 2012. “Cut his arm. They didn’t send him to the nurse.” He was up that night, throwing up. Their pediatrician and doctors in a hospital emergency room said there was nothing seriously wrong. But bacteria had entered his bloodstream from the cut.

“He was starting to turn blue by Friday night. On Sunday night, our beautiful boy died. He was almost blue from head to toe. The Tuesday night before he died, I bought him a pizza and asked what type he wanted. The following Tuesday, I was in a funeral home and they asked me what coffin I wanted.”

Like the Carrs, the Stauntons started a foundation — called End Sepsis, the Legacy of Rory Staunton — to increase awareness of sepsis and improve measures to prevent it.

“We had never heard of the word ‘sepsis’ before Rory died. We didn’t hear it in the hospital,” Staunton said. “We had a hearing in the United States Senate on it. We found out that it was killing a quarter of a million Americans every year. Since Rory died, almost three million Americans have died from sepsis.”

With the work of the foundation and extensive coverage of their case by the late Times columnist Jim Dwyer, New York passed regulations that dictate how doctors should treat the preventable disease. The rules have been credited with helping to save thousands of lives.

“It totally destroyed my life, my wife’s life, my daughter’s life,” Staunton said. “Rory would now be 23. Trauma is the world we live in. It’s the world we’re surrounded by until, fortunately, we die.”

This article is part of Times Opinion’s Holiday Giving Guide 2022. The author has no direct connection to the organizations mentioned. If you are interested in any organization mentioned in Times Opinion’s Giving Guide 2022, please go directly to the organization’s website. Neither the authors nor The Times will be able to address queries about the groups or facilitate donations.

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