As the foundation grew, the Dempster family split apart. Ryan and Jenny separated a year ago and are going through a divorce. As Dempster starts his career in Boston, his three children will be in Chicago with their mother.
Riley is doing well, attending preschool. She will visit her father in spring training and often during the season.
“When you get older and your kids start growing up, it’s tough being away from them,” Dempster said. “You don’t want to be too far away from there. But I’ll be able to see them a lot.”
Dempster knows Riley benefited from a quick diagnosis. So when parents tell him that Riley’s story led to their child being tested, it makes him pause.
“That’s powerful,” he said. “That’s what we’re trying to accomplish, to get people the help they need and the support they need.”
The plan is for Riley to take over the foundation when she is an adult. She was its inspiration, after all.
“I want to see that someday,” Dempster said. “That would be special.”
Because she worked in the health care industry for 15 years and was a close friend of the Dempster family, Breedlove Sells was a good fit to run the foundation. But her motivation is intensely personal.
She is Riley’s godmother and treasures every inch of progress the little girl makes. Breedlove Sells also knows how difficult it can be because of her own journey. A rare disorder left her without a thumb on her left hand and eventually required major spine surgery. She cannot have children.
“Ryan has never met a stranger — he’s a sincere and genuinely nice person,” Breedlove Sells said. “I wanted to be involved in the foundation, but when Riley was born, it was something I knew I had do because of my own experiences. I think I scared the first director away with my fever.”
For the first 18 months, Breedlove Sells traveled the county educating herself — and the Dempsters — about 22q. She attended conferences, met parents and spoke to doctors.
“I was shocked at how incredibly common this was but how little people knew about it,” she said. “The foundation took a hard right turn toward preaching to people about what this syndrome was and how to identify it.”
In 2011, the campaign literally hit the road in a rented RV as Breedlove Sells, with her husband Chris driving, went from state to state from their home in Dallas.
But that wasn’t good enough.
The 2012 summer tour was done in a brightly wrapped “22q Bus” that looked like something out of the 1970s. Because 22q is still largely unknown, Breedlove Sells copied the look of the flowery “Mystery Machine” van from the old “Scooby-Doo” television show.
“The idea was to bring people over to the bus to see what it was all about and then educate them,” Breedlove Sells said. “We went 10,000 miles and stopped everywhere we could. People flocked to that bus.”
That meant malls, minor league games, hospitals, even gas station parking lots.
“Any organization will tell you that exposure is significant, and that is one of the things we’re most proud of,” said Breedlove Sells, who will undertake a third tour this summer. “We never expected it would take off the way it did.”
Much of the focus has been in Chicago. But events were held in Dallas when Dempster was traded to the Texas Rangers last season and in his native Canada. Plans are being made to host events in Boston this year.
“We’re all over the country now,” said Dempster.
For families, 22q never goes away. Once babies are stabilized, developmental issues make elementary school and high school different challenges. Early detection helps doctors and therapists tailor treatment plans.
“Health care is so good that most issues are treatable,” Breedlove Sells said. “The No. 1 priority is to drive awareness within the health care community and the general public.
“This is the rest of my life. My goal is to leave a positive legacy for Riley and kids like her. Riley has a great life and I always say I want other kids to have the life of Riley.”
“We’re Red Sox people,” said Lisa Jennings, who lives in Weymouth with her daughter Monica, an 18-year-old student who has 22q. “We were really excited when they got Ryan to pitch.”
Jennings, a single mother, shares a home with her sister and her sister’s son, Scot Jennings. Dempster was Scot’s favorite player long before the family’s connection to the Dempster Family Foundation was established.
“My nephew always liked watching Ryan pitch,” Jennings said. “It’s kind of amazing how he came to be such a presence in our lives.”Continued...