FORT MYERS, Fla. — Ryan Dempster decided in 2009 that he wanted to establish a charitable foundation. The legal paperwork was easy enough, but picking a specific cause to support required more thought.
Since his days as a minor league player, when he volunteered to speak at elementary schools and Little League banquets, Dempster had supported various organizations and endeavors. His commitment increased over the years as he became more established in baseball.
“We have a great opportunity as athletes to give back,’’ said Dempster, who in December signed a two-year contract with the Red Sox. “But all I really knew when we started the foundation was that it would involve helping kids.’’
In April of that year, the righthander’s decision was made for him. His second child, a daughter named Riley, was born with 22q11.2 deletion syndrome,
a genetic condition that can cause a wide range of health and developmental disorders.
Experts estimate that as many as 1 in 2,000 babies are affected by 22q, making it second only to Down syndrome in rate of occurrence. But 22q often goes undiagnosed for weeks, months, or ever at all.
22q can manifest itself in 180 different ways, according to the latest studies, from heart defects to hearing loss and learning disabilities. No two children are affected the same way.
Riley did not come home from the hospital for more than two months. She required a tube in her trachea to assist in swallowing and another for food. But she was fortunate that doctors quickly identified what she had.
“We were really blessed to go through what Riley went through with money and with connections and resources that a lot of people don’t have,’’ Dempster said. “It was always like we felt a little responsibility to help those parents and those kids.’’
The mission of the newly minted Dempster Family Foundation became clear. For parents with children struck by a mysterious condition and health care professionals trying to make sense of it, it would soon become a beacon.
Dempster has never taken an easy route. As a pitcher, he has been a starter for 11 of his 15 seasons but also a closer for four seasons who was good enough to save 33 games for the Cubs in 2005.
He was an All-Star at the age of 23 then not again until he was 31. Along the way he has been released once and traded three times.
At 35, Dempster joins the Red Sox rotation as the No. 3 starter, somebody expected to provide stability to a group badly in need of it.
“He is a grinder, a real pro,’’ teammate John Lackey said. “There’s a lot of respect for Ryan around the game. He gets after it.’’
The same is true off the field. Plenty of people think they are funny, but Dempster got on stage at the old Comedy Connection at Faneuil Hall one night in 2001 when the Marlins were in Boston. He told jokes for eight minutes and got laughs.
“Kind of terrifying,’’ he said. “But I wanted to see if I could do it.’’
When it came to his charity work, Dempster looked beyond the superficial efforts made by so many athletes. He desired to make a true impact.
“I always wanted it to be bigger than just locally,’’ he said. “I wanted it to be something national. I have this great public platform to speak about it and hopefully to help a lot of the families going through the same thing.’’
Riley was born on April 1, 2009, five days before the Cubs started their season. Dempster had to find a way to help care for his fragile newborn daughter while dealing with
the travel demands that baseball brings.
“Sometimes the baseball field is a place to get away, but not always,’’ he said. “The times it was toughest, when I was struggling a little bit, I felt like maybe my emotions, I wore them on my sleeve a little bit.
“I kept it inside for such long time and felt like I needed to get it out, not just for myself but for the other families.’’
Dempster and his wife Jenny turned to a family friend, Michelle Breedlove Sells, to run their foundation. But they were involved on all levels, particularly in connecting to other families.
“Jenny hit the nail on the head with Riley, talking to other parents on websites and chat rooms,’’ Dempster said. “We’ve had families to our home for birthday parties. You have a common bond. Baseball is completely irrelevant to that.’’
According to annual financial reports submitted to the Internal Revenue Service, the Dempster Family Foundation raised $1.591 million from 2009-11 and contributed $523,273 in the form of grants to fund clinics, summer camps, and conferences.
The balance has been used largely to fund a national campaign to raise awareness of 22q and foster a network of families.
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.’’
Jennings is a passionate presence in the 22q community, serving as a member of the New England Regional Genetic Group and helping to organize men’s benevolent groups on the South Shore to raise money for projects. If there is a 22q event being held in the area, Jennings is sure to be there.
“The Dempster philosophy is that we’ll help you do what you want to do, but we’re not going to run it for you,’’ Jennings said. “That’s fine. I can ask people to get involved.’’
Breedlove Sells, at Jennings’s invitation, attended a meeting at Brandeis focused on 22q support. For Jennings, it was part of a goal of helping other parents surmount the obstacles she often did by herself for Monica.
“In my experience, when families can communicate with each other, it makes all the difference,’’ she said. “Even some really rare conditions are much better known. There’s still a lot of people who don’t understand what 22q is. Michelle has listened to what families are saying and is responding to what we needed.’’
Monica was in the hospital for six months with breathing problems after she was born and required a trachea tube until she was 14. Over time, developmental issues cropped up.
“It becomes even murkier then,’’ Jennings said.
But Jennings’s persistence has paid off. Monica is a postgraduate student at Weymouth High who loves to write and is doing occupational therapy. She passed the MCAS tests and wants to go to college.
“She’s doing amazingly well,’’ Jennings said. “She has a lot of special needs but functions at a pretty high level. She’s a great kid.’’
This summer, more than ever, Red Sox games will mean a lot to their family.
“We want to see Ryan pitch,’’ Jennings said. “Nobody will be cheering more than we will be.’’
Bettsy Leech is a genetic counselor and case manager of the 22q clinic at Cincinnati Children’s Hospital Medical Center. She is blunt in stating that the syndrome is unlikely to ever be cured.
“We can’t fix sickle cell anemia, which is caused by one single DNA letter change in one gene,’’ she said. “We have kids [with 22q] who are missing genes. Gene therapy is probably not going to happen.’’
The alternative is assisting families with the many challenges they will face. There are children with 22q who die shortly after birth and others who grow up to earn master’s degrees. Early detection and treatment makes the difference.
“Somebody could throw their money into trying to find a cure,’’ said Leech. “But along came the Dempster Foundation and they focused on support and networking. Before the Dempsters and their outreach, nobody was connected.
“Doctors can tell you the bad things. What they have done is give families hope and let them know the positive things about their kids. They’re all about support, and that kind of good news travels fast.’’
Leech doesn’t know Dempster but has worked closely with Breedlove Sells. The Dempster Family Foundation is helping fund a family conference this summer at a hotel in Blue Ash, Ohio, that will connect parents and help train them.
“I hate to say this, but somebody famous having a child with 22q was awesome,’’ said Leech. “It’s so reassuring for mere mortals to know that it can happen to rich and famous people. It doesn’t make you feel picked out or punished. The national recognition has been incredible.’’
Leech said that cases of 22q sometimes go undiagnosed for years. In the 5-10 percent of the cases that are hereditary, she has met parents who didn’t realize they passed it down to a child.
After a diagnosis is made, the patient’s quality of life improves almost immediately. Calcium deficiencies can be addressed along with anxiety issues and thyroid issues. One adult patient told Leech she was relieved to learn she had 22q because that explained her learning disability.
“People who have to work twice as hard to do some things that their brothers and sisters are doing think there’s something wrong with them,’’ Leech said. “If we can get more general practitioners familiar with this, it means they can do preventative care.’’
By talking about 22q and raising awareness, Dempster has helped change how hospitals operate.
“He gave us hope,’’ Leech said. “It’s not a PR stunt.
“I wish he had signed with the Reds. I want to tell him in person how much he means to people. He’s making a difference in their lives.’’