Ryan Dempster long ago realized something that dawns on many professional athletes too late – that their influence may never be greater than during their playing days.
Inspired by his daughter, Riley, the Boston Red Sox pitcher from Gibsons, B.C., is devoting his off-field energies to spreading the word about 22Q – a syndrome that affects newborns at a rate second only to Down syndrome – via the Dempster Family Foundation.
Formally known as 22q11.2 deletion syndrome, it is the result of a baby missing information from the 22nd, or smallest, chromosome, and manifests in up to 180 different symptoms, some debilitating, including heart defects, breathing and gastrointestinal issues, slow growth, developmental delays, autism and learning disabilities.
As a newborn, Riley spent more two months in hospital attached to tubes because she was unable to swallow, and later endured autoimmune disease. The syndrome affects about one in 2,000 newborns, according to current medical statistics, though Dempster says new research is pointing to an increased rate, perhaps as high one in 1,400.
Though relatively common in terms of incidence, most of the general populace have not heard of it. (A separate group, the International 22q11.2 Foundation, is promoting an awareness day, May 19.)
Dempster is scheduled to make his first appearance in Toronto on Thursday – in his 553rd career game and one day before his 36th birthday. He is 125-126 with a 4.32 earned-run average, with 327 starts and a total of 2,245 2/3 innings on his docket with the Florida Marlins, Cincinnati Reds, Chicago Cubs, Texas Rangers and Red Sox.
As a major-league baseball player, “you get this public platform, whether newspapers, internet or TV, where we’re allowed to get the word out about something, whatever it is,” Dempster said. “Doing this foundation has nothing to do with Riley’s [health]. Sharing her story is part of it, but she’s fine. As parents we had the connections to find the best doctors and money to be able to afford crazy medical care. A lot of parents don’t have that.”
Riley, 4, has recovered sufficiently through medical attention and therapy to attend regular preschool. It’s been an arduous process, Dempster says. Any parent of a mentally or physically challenged child can identify with his personal educational process, as instigated by Riley’s birth.
As he put it: “I went from first learning about it to high-school [level knowledge], to college and now I’ve got an assistant doctorate. Your life becomes engulfed by it. Anything you can do to be proactive for the child at each stage of her life, you do it.”
Dempster and his wife, Jenny, frantically sought answers after Riley was born and found few.
The Dempster Family Foundation, established in Atlanta and now with a Canadian branch, gave grants last year to three children’s hospitals, Dragonfly Forest camp, and the Illinois chapter of March of Dimes. An annual golf tournament on B.C.’s Sunshine Coast, run by Dempster’s father, Wally, is among their sources of funding, as is his own donated memorabilia such as signed jerseys. The foundation has thus far raised more than $1.6-million.
In discussing the endeavour with Dempster, it is evident his passion lies in bringing together families whose children have been affected. The foundation’s website is one conduit, his personal appearances an instigator.
“You don’t know how many times we have had a meeting – we did one in Georgia … at the hospital … at baseball fields, at Wrigley Field, in Texas – where you get a group of people with kids who have 22Q, none of them knew each other – they felt alone,” he said. “You begin to create this community, even if it is just for people to get answers from other parents. … We’re connecting those families and expanding the parent chat rooms. Now, you have more people on there and obviously more answers.”
Though Dempster and his wife are in the midst of divorce, the foundation’s work has continued uninterrupted, says its director, Michelle Breedlove Sells, also godmother to Riley. She’s driven a specially outfitted bus around the U.S. to disseminate information to parents and their families.
“To say we’re experts about 22Q, that’s not in our our wheelhouse,” Breedlove Sells said in a telephone interview. “We want to use his celebrity to drive awareness. Whenever he is given an opportunity to speak out, you don’t have to convince Ryan. It comes naturally to him.”
Dempster intends to continue commitment to the foundation’s work beyond his playing days. He says Riley’s story of discovery and recovery has brought comfort to many families, and hopes when she grows up, she may be an employee of the foundation she’s inspired.
“You go through that transition out of, ‘keep them alive,’ to ‘make them thrive,’” he said.