Brittney Jones remembers the start of the phone call. She doesn’t remember the end.

She had taken her toddler son, Jayden, to five doctors searching for an explanation for his slow development. Throughout his life, he never clung to anyone holding him. His body would remain limp. And well after he learned to walk, he fell constantly. His head always seemed full of knots from taking falls.

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Eventually, she secured a coveted appointment with a top neurologist at Stanford.

A few weeks later, he called to deliver bad news about a precautionary blood test and kept using the word Duchenne (doo-SHINN). Brittney started Googling while he was still talking.

Fatal. … No cure. … Life expectancy in the 20s.

“Everything went blank after that,” Jones said. “You’re just like, ‘There’s no way my child has this.’”

That day, Jones was like a lot of people. She had never heard of the muscular dystrophy disease with which she’s now intimately familiar. Within six weeks of his diagnosis, Jayden began weekly blood infusion treatments in Sacramento, California, 90 minutes from his home in the Bay Area, and he is participating in an experimental trial in search of a cure that requires frequent travel to Cedar Rapids, Iowa.

Stories like Jayden’s are rare and often untold. Across college football this weekend, coaches will don a “Coach to Cure MD” patch on their sleeves for the 15th season. For many programs and coaches, the cause runs deeper than just an embroidered sleeve. Programs like Rutgers, Ohio State, Tennessee, Wake Forest, San Jose State and countless others at various levels of football extend invitations to kids battling Duchenne to give them an up-close view of a sport most never will have an opportunity to play.

“I think it is wonderful that the American Football Coaches Association is behind this important cause because our actions can help to amplify the need for more research and funding to help find a cure,” Ohio State coach Ryan Day said.

And for many families, it represents hope and a week they’ll never forget.

Brad Todd had never heard of Duchenne until his nephew was diagnosed with it in 2005.

The genetic disorder most often affects males and slowly deteriorates the muscles in the body. Usually, calves are one of the first muscle groups to fail, and walking becomes difficult. The arms soon follow, and when the lungs fail, patients may need more and more help breathing. Eventually, the heart begins to fail.

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“Duchenne is a very gradual killer,” Todd said.

Like Jones, he quickly learned there is no cure. He also learned his ignorance of the disease was closer to the rule than an exception. He sought a way to try and fix both.

Around 1 in 5,000 male births are diagnosed with the disease, and around 20,000 are diagnosed annually around the world. Todd knew he had to do something.

“The first year I wrote as big a check as I could to a research group. The next year I wrote as big of a check,” Todd said. “But I realized I could never write enough checks. We had to do something different.”

Todd reached out to Phillip Fulmer, who had just ended his term as president of the American Football Coaches Association, and pitched him on the idea of a signature charity for college football coaches to embrace. By July 2008, “Coach to Cure MD” was born with two goals in mind: Find (and/or fund) a cure and raise awareness of the disease.

Coaches across the country wear the patches on their sleeves, but many programs invite a child with the disease into their program for a week and on the sidelines for a game that weekend.

More than a decade ago, Matt DeRiggi was one of those kids, welcomed into Rutgers’ program by then-and-now head coach Greg Schiano.

“The first time Greg introduced him to the team was really, really exciting. Sometimes they took him into the locker room after a victory,” said Tom DeRiggi, Matt’s father. “Those were really special times.”

They frequently went to games and practices, and it spawned a longtime relationship among the DeRiggis, Rutgers and Schiano. Schiano left Rutgers for the NFL before the 2012 season, and the DeRiggis began a tradition they still continue today, trekking across the country to training camps to see the former Rutgers players they got to know years ago.

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“They always send me pictures from all their stops. Wherever I’ve been, whether I was at Tampa or Ohio State, I’d always get the pictures,” Schiano said. “All of a sudden, I’d get a picture with them and our former players, and it always makes you feel good to see them interacting without us involved.”

At some campuses, it can be an unforgettable week. At many places, it can lead to much more. The program also had a long-standing relationship with Danny Garofalo, who died at age 16 in 2018.

“It’s a very difficult disease to deal with, but we’ve come a long way,” DeRiggi said. “Kids are living longer and having quality in their life, which is really, really important for all of us.”

Former Rutgers coach Kyle Flood continued the relationship with the DeRiggis, and it has only grown since Schiano returned. Matt DeRiggi, now 24, is an intern in Rutgers’ marketing department.

“It gives him purpose, it gives him balance in life, and it creates memories, which is really important for us,” Tom DeRiggi said.

Saturday will be another memory for Jayden Jones. In 2019, when he was just 6, he spent a day hanging out at San Jose State’s practice and in the locker room. During practice, he got to run a play and score a touchdown.

“I was the biggest ball of tears. And I was pregnant at the time. But it was the sweetest thing,” Brittney Jones said. “And he was so happy.”

Most importantly for Jayden, he got to go head to head with players at video games instead of spending the day at school.

“It’s just a phenomenal experience. Boys with Duchenne typically don’t get to play a lot of sports, and it gives them an opportunity to go out on a field they wouldn’t typically get to go out on,” Brittney Jones said. “He just has so much fun.”

But the past two seasons, Jayden hasn’t been able to participate because of the COVID-19 pandemic. This year, he’s back. His mom said he understands more about the experience now but needs a scooter to get around as the disease has progressed.

This year, he’s also planning to bring another friend with Duchenne and his family to experience the day at San Jose State. The tight-knit community of families has embraced the experience for their kids just as some programs have embraced the “Coach to Cure MD” cause.

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“We’ve been wearing the patches for some time, but it’s great for our players to be able to understand more about what that is and understand that some of these kids don’t get to play football like they do or live life the same way. To give them an understanding and empathy for families in that situation is important,” San Jose State coach Brent Brennan said. “The biggest impact is to see how it makes the kids we bring in feel. To see the smiles on their faces and the tears in the eyes of their parents is really, really special.”

(Top photo: Courtesy of Brittney Jones)