On what ends up being the eve of their son Rory’s death in 1998, Ross and Mindy Deutsch hold the 7-year-old’s hands. Rory — diagnosed with an inoperable brain tumor only months earlier — is in bed, at home in Highland Park.
The Indian Trail Elementary School student had lost the ability to communicate verbally.
Ross delivers a gentle order to his son:
“Squeeze our hands if you’re scared.”
They wait for a response …
Ross Deutsch’s eyes turn glassy at a table in Sandy’s Restaurant in Highwood. The 56-year-old father of four thinks of Rory every day, and he’s kind enough today to revisit a period of time a parent should never have to endure. I learn that Rory loved learning about the planets and the stars and that one of his favorite books was Margaret Wise Brown’s Goodnight Moon.
Rory squeezes his parents’ hands.
“Don’t be scared,” his father says. “We love you. We’ll always be your mommy and daddy. We’ll always be with you.”
Shortly after Rory’s death, Ross Deutsch — a former Chicago Mercantile Exchange trader and an assistant varsity boys basketball coach at Highland Park High School since 2004 — arranged for a meeting with a fundraising consultant in Chicago. Deutsch wanted to establish a foundation in his son’s name, but he had no idea where to start.
The consultant suggested a gathering of people for a backyard barbeque.
It was not what Deutsch wanted to hear.
He then met with a person affiliated with a nonprofit association dedicated to providing support for families of cancer patients. But the association would not allow the Deutsch family to earmark the funds raised at its events.
“I got the impression that the professionals I spoke with thought people would forget about Rory in one, two or three years,” Deutsch — awaiting his order of a ham, cheese and broccoli omelet, with potatoes and rye toast — says, his head shaking slightly.
The Deutsch family members had a Plan C: organize a big-time event themselves. They chose to hold it at the Adler Planetarium in Chicago, a venue, no doubt, Rory would have loved to call a second home.
The event raised more than $600,000 for the Rory David Deutsch Foundation (RDDF). To date, some 19 years after Ross and Mindy lost their firstborn, RDDF has generated more than $8 million. Most funds are earmarked for pediatric brain cancer research. There is an endowment in Rory’s name at Lurie Children’s Hospital in Chicago, and there is a professorship in Rory’s name at Duke University.
Duke men’s basketball coach Mike Krzyzewski, whom Deutsch met and played for at a Michael Jordan Fantasy Camp in Las Vegas in 1997, has worn an RDDF pin at every Duke game since 2002. The pin features the foundation’s tag line: “For brighter tomorrows for children with brain tumors.”
“My mom [Enid] and my sister [Ellyn Samsky] have devoted so much time and energy to sustaining Rory’s foundation,” says a grateful Deutsch, shaking his head again for an entirely different reason this time. “Ellyn’s boys [Marc, 30, and Craig, 28] are like big brothers to my kids [Robbie, 24; Rickey, 22; Reggi, 18; and Roxie, 16].
“And Mindy,” he adds, “continues to be the single most important person in my life. She is the love of my life, my partner, my best friend and my daily inspiration.”
Ross Deutsch grew up in Skokie and attended Niles North High School, helping the Vikings’ gymnastics team place third at the state meet in the 1976-77 academic year. Many of his close friends today were his close friends in high school, including Barry Bakal, who created the annual Rory Awards for Citizenship at Indian Trail Elementary School in 1999. Students at the school where Rory attended either compose an essay about citizenship or produce a drawing that depicts citizenship.
Faculty members select two winners each spring; Bakal donates $200 in each recipient’s name to the RDDF. This year’s awards went to fifth-grader Parker Feder (essay) and first-grader Eve Johnson (drawing).
Feder researched Rory’s life before writing his moving piece.
“In the seven years Rory was alive, his kindness created a ripple effect,” Feder wrote near the end of his essay. “He’s like the stone thrown in the pond. The [continuous] spreading of the ripples because of his inspiration means that, in a way, Rory’s goodness continues to spread almost as if he [were] still alive.”
Forget about Rory?
Never. Gonna. Happen.
The day ahead for Ross Deutsch is filled with summer-camp basketball duties. He’ll view game film with HPHS head boys varsity basketball coach Paul Harris and returning players. He will then watch Giants compete in night games at Stevenson High School.
“We watch film, a lot of film, probably as much as coaches and players in a college basketball program do,” says Deutsch, who graduated from the University of Illinois with a degree in finance in 1983.
“Being a parent,” he adds, “is a lot like being a coach. Your kids are going to struggle at some point in life; your players are going to struggle at some point in a season. The key is to struggle well, not get overwhelmed. As a parent, as a coach, I want the young people in my life to respond thoughtfully to a challenge, rather than react quickly to it.”
Years after Rory’s death, Deutsch responded wonderfully to a framed photo hanging on a wall in his home. It was an image of Ross Deutsch with his good friend and Rory’s godfather, Marc Miller. They had just finished running the Chicago Marathon. Deutsch posed for the picture while holding a post-race beverage in his left hand.
The beverage obscured part of Deutsch’s bib number, making it appear Deutsch had traversed the 26.2 miles with No. 3991 near his heart.
Rory David Deutsch’s date of birth: 3/9/91.
“I noticed that about a year after the race,” Ross Deutsch says. “I smiled.”