Riley Dempster proves we’re all linked, and we don’t dare break that
“She is surprising everyone.”
That’s a proud mother talking. But as soon as the words got out of Jenny Dempster’s mouth, daughter Riley did what all inquisitive 8-month-olds will try. Riley reached for the nearest, most interesting object — a micro-recorder into which Mom was speaking. So with the kid’s attention on the recorder, it had to be pulled back safely out of reach so Jenny could still gab.
Each day is an advancement in life, an exploration of the new world in which they live, for a child Riley’s age. Pretty and bright-eyed, she’s cut from her mom’s good looks, and definitely light-years’ improvement in appearance on her old man, Ryan Dempster, who was a few feet away running this special event at D’Agosotino’s Restaurant, four blocks west of Wrigley Field.
What made Riley Dempster’s recorder grab special was it was so normal, considering she wore a trache tube inserted into her windpipe so she could swallow. Riley has never cried or swallowed on her own since birth. She is afflicted with DiGeorge Syndrome, a condition stemming from a mutated, or partially deleted chromosome at the point of conception. There’s no blame here, no hereditary track back through the generations. Stuff happens.
But here’s the catch. The spirit of life is so strong that being thrown for such a loop can’t stop a little girl’s striving to be just that, a regular kid. In the parlance of her dad’s job for the Chicago Cubs, Riley Dempster has gone her five innings already to qualify for the decision — she is owed a normal life. She won’t need an other-worldly miracle, though, because we are all givem the ability to create terrestrial small miracles, simply by being human, by moving forward spiritually and intellectually, by being a part of a community instead of standing on an island, grunting “I’ve got mine.” We’ve heard the latter too often from Wall Street and Washington, D.C., particularly from those Middle Americans who don’t want a change in how we administer health care.
What better time than the holiday season to remind that we’re all linked, whether we like it or not. Break the link and it all breaks down. Take the case of the Dempster family, and just medically speaking. The fact Riley has gotten to this point where she can go on an outing for the kickoff of her parents’ family foundation’s fund-raising efforts for DiGeorge, or watch her father pitch at Wrigley Field, can be traced back to a young orthopedic surgeon kicking himself that he couldn’t save Sandy Koufax’s golden left arm 45 years ago.
Dr. Frank Jobe did not understand the physiology of the human elbow enough in the mid-1960s to perform a tendon transplant on Koufax. The Dodgers left-hander pitched in constant pain, his arm blowing up to grotesque size before every start, before prematurely retiring at age 30, his legend cemented for all time but with a lot of work undone. Jobe eventually figured it out and performed a tendon transplant on lefty Tommy John in 1974, only partially assuaging the regret he felt in not being able to save Koufax. He made up the surgery as he went along with the help of other orthopedic specialists as witnesses in the locker room. The operation was a success. John returned to pitch for another 15 years, ’till age 46. And the Tommy John surgery named after him was refined to the point where sore-elbowed pitchers came back as good as new, if not better, after the transplant.
Ryan Dempster underwent Tommy John surgery in 2003. The procedure gave him a new lease on career life and the ability to earn tens of millions more, first as the Cubs’ closer, then a starting pitcher that was always his first preference. But if Dempster’s career ends six years ago with the bum elbow, or maybe the surgery was never invented, maybe he doesn’t have the money to pay for the round-the-clock care that has brought Riley to this point in her development — or be able to aggressively campaign for awareness of DiGeorge and other diseases, so that those less financially fortunate can also save their children.
The Dempsters already have helped others, such as hosting families at Wrigley Field on Father’s Day weekend when the man in the family was overseas in Iraq or Afghanistan. But now they’ll really rev up their own linkage via the Ryan and Jenny Dempster Family Foundation, at www.DempsterFoundation.org.
We’ve interviewed Ryan Dempster ’till he’s almost blue in the face since he came to the Cubs in 2004. So let Jenny Dempster take her turn this time in describing how we have to move forward, again, in a never-ending quest.
“We still have a long way to go, teaching everyone,” she said. “We were fortunate they discovered this so early. We had the benefit of the diagnosis and treatment early, so she is ahead of the game because of that.
“There’s a lot of families who haven’t had that. Even today, we’re meeting families who are not getting a diagnosis until they’re 2, 3 or 4. Our goal is to get people diagnosed during infancy. We had her diagnosed in the first week and that’s made all the difference. Many parents have gone through years of struggling trying to find out what’s wrong with their children. They don’t have a name for it (the disease). Once you have a name for it, you know where to look, the doctors to go to, the procedures to expect. Before they went from specialist to specialist, not knowing what to do.”
Ryan Dempster is the workout fiend of the Cubs, engaging in grueling conditioning so that he can be the best starting pitcher possible. I suspect some failures as a closer in 2006-07 are also mixed into that motivation. But the good thing is some of pop’s determination was passed along to Riley.
“She is phenomenal,” Jenny Dempster said. “All the doctors, she’s impressing them all. She’s a little developmentally behind. (Without a voice) she finds other ways to communicate with us, to let us know how she feels.”
Big brother Brady, 3 1/2, has done his part.
“It’s been tough,” Jenny said. “It’s hard enough to bring a new baby home. And then to have someone who didn’t come home (for three months) and someone who didn’t cry, like her. It’s resentment, because she’s taken some time away from him. There’s been some times we’ve had to keep them separated, because there’s been times he’s come home from school with a runny nose. She can’t get sick (because her immune system is compromised). That’s hard, too, not having that normal sibling bonding.
“He does talk about her trache. He tells people they can’t put their finger on her trache because that’s how she breathes. It took a long time for him to realize that she wasn’t sick. He didn’t want to give her hugs and kisses because he didn’t want to get sick. He thought you’re in the hospital because you’re sick. He had to learn she wasn’t contagious. But he’s great, a great advocate for her. He’s going to be her biggest supporter and he’s going to help her lead a normal life.”
What’s next in Riley’s treatment and development?
“The main thing is they don’t know how much swallow function she’ll get,” Jenny said. “We’re working on training her to protect her airway. She doesn’t need the trache to breath. She needs it to swallow, otherwise she aspirates and gets fluid in her lungs. We’re working to train her to cough, to clear her lungs.”
The Dempster Foundation will not just educating people so they can get their children diagnosed earlier, but also educate the medical community to get earlier diagnosis and getting more physicians interested in DiGeorge.
“The more medical people interested in it, the more doctors working on it, the more breakthroughs on it,” Jenny Dempster said. ” The people who aren’t diagnosed, older children, too, will help from research. A lot of these children have heart problems. There’s 180 different things (symptoms). In Riley’s case, she does not have heart problems. Speech, swallowing, palate issues. If they don’t have those heart problems, it often goes undiagnosed ‘till school age and they start having speech problems and learning disabilities.”
The foundation, according to Jenny, will run the gamut from animal charities to other children’s charities. Grants will be offered.
But here’s a suggestion: Since Ryan Dempster is a Canadian who recalls how his fellow countrymen were “happy and healthy” with a health-care system safety net under all, the foundation in upcoming years should look into linking funding for treatment of DiGeorge and other afflictions to help the vast majority not able to afford the kind of top-of-the-line care given to Riley. It’s a brave new world if the pull-yourself-up-by-the-bootstraps, self-reliance, I-got-mine crowd has to finally step aside to allow health care to be a right, not a privilege, in this country.
Staying ahead of the game is important in this legitimate, no-child-left-behind effort as we adjust to a new way of thinking. For the Dempster family, that would continue the linkage attributed to Dr. Jobe that in fact began much, much earlier — when we first became human.