To put it mildly, June 3 was a big day for Riley Dempster.
Likewise, it was one of the biggest days in the lives of her parents, Ryan and Jenny Dempster. For Riley had accomplished something that meant more than anything -- more than if her dad had pitched a perfect game or if the Cubs ever were to win the World Series.
On that day, 14-month-old Riley had her endotracheal tube removed, defying the odds and inspiring doctors and her parents alike. In just the fifth week of her life, doctors had performed a tracheotomy on tiny Riley, necessitating the "trach." She had been diagnosed with DiGeorge syndrome, a chromosomal deletion that affected her ability to swallow and digest food.
Indeed, June 3 was a monumental day, especially considering doctors once told the Dempsters that Riley would need the trach her entire life.
A tough road ahead
"We used to joke around last year, they say what doesn't kill you makes you stronger. I said, I'm going to be able to lift my house here pretty soon," Ryan said, smiling.
He might be able to chuckle now, but getting through the last 14 months has been both challenging and exhausting for the Dempster family.
Riley was diagnosed with DiGeorge, also known as 22q11.2 deletion or Velo-cardiofacial syndrome (VCFS), just days after her birth in April 2009. What the Dempsters have learned since might qualify them for an honorary medical degree.
DiGeorge is a genetic disorder caused by a very small missing piece (micro-deletion) of chromosome 22. The deletion is present from the time a child is conceived and is generally found in every cell of the body. But with the potential of 186 different symptoms, it is often hard to diagnose.
"No kid has all 186 symptoms but no kid has just one either," Jenny said. "And they can present in so many different ways so you can have one kid that has significant heart defects and then another kid, like Riley, who has swallowing issues.
"It's not rare; it's just not well-known. It's actually very common, second only to Down syndrome. They used to say one in 4,000 kids has [DiGeorge], and now they're looking at more like one in 1,200, and those numbers are going up."
Counting their blessings
After hearing stories about families whose children have gone undiagnosed or misdiagnosed for years, the Dempsters consider themselves very lucky that doctors diagnosed Riley so quickly. Jenny had severe polyhydramnios, an excess of amniotic fluid, when she was pregnant, so doctors were already looking for something when Riley was born.
"Within the first few days after her birth she started showing other signs, like turning blue, which shows that oxygen saturation levels are going down," Jenny recalled. "She got really jittery and shaky in the hospital, so they tested her calcium and found it to be really low. So they kind of put all of those things together with the fact they knew she wasn't swallowing very well, and that's probably why we got a diagnosis so fast."
The Dempsters immediately went to work. Jenny spent hours on the computer learning everything she could about 22q and consulted doctors to determine the best course of action. Meanwhile, Riley spent the first 12 weeks of her life in hospitals undergoing mountains of tests, and surgery to insert the trach and a gastric feeding tube because Riley could not swallow food.
Riley returned home to Ryan, Jenny and big brother Brady when she was 3 months old, continuing to be under 24-hour nursing care and with work ahead. But it didn't take long for the physical, occupational and speech therapy she was undergoing to make a major impact.
"Speech and physical therapy are the ones she has the most. They would work on building up her muscles to swallow, feed her, work with her on making sounds. She learned right away to close the trach off herself to make sounds. She would put her chin over it or she could even press down with her muscles and close it off so she could speak," Jenny said. "Doctors were amazed at what she was doing."
Not surprisingly, as Riley got better throughout the 2009 season, so did Ryan's numbers. Coming off a career-best 17-6 record and an All-Star appearance for the Cubs in 2008, he went 4-5 with an ERA north of four through the end of June 2009. The rest of the season, though, Ryan went 7-4 with a 3.21 ERA, run that happened to coincide with Riley's return home.
Almost a year later, Riley is happy, healthy and meeting her milestones, and while she still requires a feeding tube for now, everything is progressing better than the Dempsters could have expected.
Despite the team's struggles this season, it's easy for Ryan to put things in perspective on the field.
"At the end of the day it's just baseball. We're not curing cancer; we're not curing DiGeorge syndrome, but we have a job to do. It's not the end of the world if we don't win, but I probably want to win a World Series more now than I ever have.
"I draw inspiration from [Riley], and I draw that drive to want to do the best I can, because I've watched what she does on a daily basis, and I watch how she's handled everything and never given up."
The Dempsters have always felt a responsibility to give back, so it was natural form them to begin thinking about starting a charity of their own. In a strange twist of fate, they were in the process of deciding what type of foundation they wanted to start when Riley was born.
"It's like somebody said, 'Do it for this. Here, we're going to give you Riley, and you guys can go out and make a difference because there are parents out there who don't know how to get the word out. So here, you guys can do it,'" Ryan said.
And getting the word out is the couple's main goal.
"Meeting so many parents and talking to so many people, we realize so many kids don't get diagnosed until later on in life and the parents go through such struggles the first years of their lives not knowing what's wrong with their kids," Jenny said.
"I just got an e-mail from a mom about a month ago whose daughter is 9 and just got diagnosed," Jenny added. "Nine years of not knowing why thing were happening to her daughter, and now she has a diagnosis and a plan of care. It breaks my heart to hear these stories."
The Ryan and Jenny Dempster Family Foundation lends support to charities and other organizations helping children with 22q DiGeorge syndrome through monetary grants, educational and fundraising programs and increased community awareness.
Their goal is to help raise $2 million in two years to help strike out 22q. Their website has information on the disorder and even an area for families to share their stories.
"I look at what we went through as parents," Ryan said. "We went through this with money, with resources and with free time during the off-season.
"Now think about the parents who don't have all that who are going through the same things, and then think about the parents who are going through all this and don't even know that their child has it.
"We want to be able to help other parents and, most important, their children as much as we possibly can, because it's a terrible thing to go through."
In a very short period of time, the foundation began receiving an overwhelming outpouring of support that hasn't slowed.
"Ryan and Jenny are always so giving of themselves, they've always been active in the community," said Dempster Foundation's executive director, Terri Grunduski. "But I think when people realized they now had a need, it's been unbelievable how many people turned to us and said, 'How can we help?'
"Ryan's teammates, organizations, corporations, individuals, families of 22q children have all reached out. It's been amazing and so much appreciated."
Casino night and concert
Ryan and Jenny are excited to host the inaugural Dempster Foundation fundraiser this summer, a casino night and concert on Thursday, July 21 at the House of Blues. It wasn't difficult to come up with a theme: Ryan first met Jenny when she was working for the Atlanta Thrashers and he was one of the guest dealers at a casino night they held.
"It's something unique," Ryan said. "We'll have blackjack tables, roulette, craps and slot machines, just like you're playing at a casino, only you don't win money, you win prizes."
There also will be a live auction, and the night will close with a special concert. Plus, Ryan guarantees a celebrity list as good as any event in Chicago.
"It's a great cause to help out children in a big way and hopefully be able to put a clinic like there is in Philadelphia [Children's Hospital of Philadelphia's "22q and You" Center] right here in Chicago, so many parents in the Midwest and all over the country have a place to go instead of going all the way out to the East Coast."
Those interested in finding more information on the Dempster Family Foundation or buying tickets to the 22q casino night fundraiser event can visit their website, dempsterfamilyfoundation.org.