By JOHN J. BURO
MARLBORO – The words emerged from the heart -unscripted- just as they had one hundred seventy-eight times before:
They were spoken by Jim Raffone at Marlboro Middle School’s main soccer field just prior to a celebrity soccer match on August 23. Raffone, clad in the JAR of Hope Foundation’s familiar black and green, addressed several hundred summer campers from CTR Soccer, aged six through fourteen, on what effect Duchenne Muscular Dystrophy has on those boys afflicted by it.
The awful truth is that, soon after diagnosis, legs weaken and fatigue will set in. Heart issues will invariably develop. The wheelchair makes its first appearance early in the teenage cycle. Death before 30 is quite common. To anyone who either knows Raffone or understands his mission, spreading awareness of this rare neurological disease was just another day at the office -even if he needed to simplify the message for a younger audience.
“When you visit a doctor and you’re given medicine, you hope to get better,” he told his listeners. “Jamesy was told he’ll never get better. Doctor after doctor -six in all- told my wife and I, “Just take him home and love him.”
That singular statement resonated with Steph Campo, whose husband Joe is on the CTR staff. “I’m a mother of three boys -five, eight and ten-, so I have a certain connection to Jim, Jamesy and their family. “I see how blessed my children are to be playing soccer, and I’m so glad we’re able to bring Duchenne’s and this event together,” added Campo, whose love for the game was borne from the four men in her life. “It’s quite humbling for them to hear Jamesy’s story and that he might never be able to do what they do.”
Raffone’s booming voice –“Down…up…JAR of Hope”– energized the partisan crowd during yet another Push-Up Campaign ($10 for ten push-ups), which marked the 77th of 79 different recreational venues over the last year-and-a-half that he has visited.
Everything connected with JAR of Hope is done with a purpose. The significance of the Number 79 lies in the total of exons found in the dystrophin gene, the largest in the human body. Think of exons like a string of pearls. Any deviation from 79 can cause either Duchenne or Becker Muscular Dystrophy, which have similar characteristics. In the case of eight year-old Jamesy, he is missing Numbers 46 and 47.
Similarly, the two inflated green balls that are signed by all participants of a given event and are proudly displayed in Raffone’s West Long Branch office represent his son’s missing dystrophin genes.
The evening also lauded the continuing partnership between the Marlboro Soccer Association and CTR, who were participating at this venue for the 17th consecutive year and will conclude yet another successful camp with a tournament on Saturday.
But, make no mistake. Even those affiliated with the outing counted their blessings.
“When you hear Jim speak about what the normal eight year-old can do and won’t be able to do because he’s affected by this disease, it touches you,” said Frank Rizzi, the president and co-founder of CTR. “It’s tough when you think about it. It really, really, is.
“We’re out every year doing our camp in this great town,” Rizzi noted, “so, when we were informed as to what the actual charity was, we embraced it. We’re ready to do whatever we can to support the cause -playing a charity game was the least.”
Tabare (Tab) Ramos, who guided the United States U-20 National Team to the 2017 CONCACAF Championship, made a similar distinction.
“Every year we try to unite with a cause. I’m very excited about this year with the awareness created by this game,” said the youthful coach. “It’s fun to play, above and beyond anything else. And, in the end, it’s about having fun playing every day, no matter what the age.
“This sport unites a lot of different causes all around the world. Tab and Frank have done a great job over the years,” added Tony Meola, who was raised in Kearny, which is less than an hour away. “We’ve been coming back for some time, and it’s great to see all the faces that are willing to help out.”
“I’ve traveled around the world, and have seen many kids who are (physically unable) to play,” said the once-promising centerfielder who, after being drafted by the New York Yankees in 1986, embarked on a storied career which included tending goal in three World Cups.
“Hopefully, they can find some joy through the game, whether they watch it or can get funding through events like this. Somehow, this game can give them something in the end. And, tonight, that’s what we’re doing here for Jamesy.”
Meola’s longevity -he played 18 seasons, including ten in Major League Soccer- drew comparisons of another goalie who starred in the Garden State for two decades -the Devils’ Martin Brodeur.
“People have said that guys like us are crazy. I don’t necessarily…I just think there was a lot of good fortune -being around a lot of good people, a lot of good teammates. Like anything else, it was all about working hard. It’s what it is. For us, it’s working hard on the soccer field. For parents who must deal with issues like this, it’s working hard to give their kids the best they can. I don’t know of any other formula.”
“Right now, our job is to educate the kids,” Rizzi said. “They love soccer and can really get some life lessons out of it. It’s not just about sports; it’s about what sports can teach about life.”
And, on this night, a group of children learned that life -and a healthy one- is a gift that should never be taken for granted.