Danny Garofalo Jr. is now running down a football field dressed in his beloved Rutgers University red, his legs finally giving him the stride of a football player in full sprint toward the end zone.
At least, that is how his family imagines him since he lost his battle this summer with Duchenne muscular dystrophy, a genetic disorder that progressively deteriorates the muscles around the lungs, heart, and skeleton.
“He is finally running up and down the field in the way he was never able to do while on this Earth,” said his mother, Jennifer, from her home in Middlesex borough, New Jersey.
And when he left this world far too young with too few days under his belt, he left every person he met with the greatest gift he could: an energy unable to be bottled by the pain and restrictions that ravaged his body but not his spirit. He also left, by example, the lesson that no matter how good or bad a day is, it should always count, because life is always too short.
On Saturday, his parents will be on that same field — this time without him — as part of the annual Coach to Cure Game Day Coin Toss. All of the coaches within the American Football Coaches Association will display armband patches to raise awareness and funds for this disease that robs young boys of the ability to play this game.
Now in its 11th year, Coach to Cure has raised nearly $2 million. Hundreds of colleges and universities across America now participate, and more than 11,000 coaches will be wearing the patches Saturday, making it hard to miss for die-hard fans of American college football.
“Danny — who never missed a game in 11 years since he first attended for his 5th birthday — was so beloved by the Rutgers team he soon was a regular at team practices and participated in the past Coach to Cure Game Day coin toss,” said his mom, who explained how Danny was diagnosed as a toddler.
Over the years, Danny had ups and downs with the disease but always remained determined and optimistic — not about longevity, but about embracing each day.
His heart weakened considerably after a bout with the flu, following a family trip to Disney World, one of his favorite places on Earth.
The spring was filled with sleepless nights and little appetite. When Danny could eat, he often threw up afterwards. Yet, he always maintained a zest to live the best day ever, no matter what the day held.
“We had a routine check-up in the beginning of April, and when we got there, he was having severe arrhythmia. They couldn’t feel pulses in his wrists or feet. They could only hear a heartbeat. So, they had us go right up to the CCU. He was mad,” she explained.
Danny’s mom is an ICU nurse herself. Danny turned to her and said, “You’re my nurse, you’re my mom, you can keep me home.”
Then, she explained to him that while she could keep him at home if it was the flu or pneumonia, she could not keep him at home if it was his heart because she did not have the right equipment. It was at that moment she said she faced a very scary admission: “At this point, his heart function was so poor — if you were to perform CPR on him, is there potential to bring him back? And if you do, at what cost? You’re going to break all his ribs; he’s going to have all of that pain. What kind of function is he going to have? We had all of those conversations with them. Miraculously, by that weekend, they had given him some potassium, and everything settled out.”
And they sent him home.
His comment to her and her husband as they went home was, “That’s it, we are done.”
By June, he was constantly nauseated, couldn’t handle school, and was so dizzy he couldn’t even drive his own wheelchair. He went for a week with very little sleep.
“He just said, ‘Mom, I’m done. I’m not going back to the hospital.’ And he sat down with me and my husband and wrote out every single wish he had. It was no more hospitals, even if his kidneys were not functioning. Even if his heart wasn’t functioning, even if his lungs weren’t functioning. He was not going back to the hospital,” she explains.
They had him make a bucket list, so that he could have an epic summer. “And it was so simple, like go get ice cream. Fly a kite. Have a chicken wing eating contest, have a water balloon contest, whatever could make his day happy. He just radiated joy, he really did. Even when he wasn’t feeling well. Even when he was being a snarky teenager.”
After a particularly rough reaction to eating at his cousin’s graduation party, Danny went home with his mom and began throwing up. “And he looked at me, and said, ‘I think I have to go to heaven soon.'”
A few days later, he asked his parents what will happen when he does go to heaven.
“And I said, ‘God is going to be waiting with open arms. And then, your grandparents are gonna knock God over to get to you. And you’re gonna run; you’re going to be able to play baseball and football. You’re going to have the best teams of all the teams,'” she said.
“And we are just going to miss you.”
Danny slipped into a coma a few days later. One of the last things he told his family was that he had to go to heaven soon. “But he said, ‘But don’t worry, I’m going to haunt you.'”
“Typical snarky teenager,” she says.
Danny Garofalo touched more lives than he knew. Dressed in a worn football jersey given to the family by Micah Clark, one of the Rutgers players, for his wake, the line at the funeral home to pay respects to his life and legacy surpassed two hours.
When fast-food joint Sonic got word that one of Danny’s bucket list items wasn’t realized, they closed down the highway so that the funeral procession could go through and get the two items he missed: Diet Coke and tater tots.
When the family funeral procession left the service, the streets of the borough were lined with red balloons adorning mailboxes, doorsteps, signs and people to celebrate his love for Rutgers football and to end Duchenne.
He left behind his parents, Dan and Jennifer, and his brothers, Nico and Timmy.
His mom says when the coaches take the field Saturday, Danny’s presence will be there both on the field and in the stands: “He loved life, and that energy and goodwill will carry on long after the final whistle blows on Saturday.”
