Racers embrace family's long wait for liver donor
By Todd Turner
DirtonDirt.com chief writer
Since the spring of 2007, David and Trish Barker, along with the dirt racing community in and around Kansas City, Mo., have been praying for 21-month-old Tyler Barker to receive a liver transplant and a degree of health he's never enjoyed. It appears those prayers have been answered.
"We got the call!" Trish Barker wrote early Tuesday morning in her online journal. "We are heading down there now and will update later once things get going. Pray, pray, pray everything will go great!"
Dallas Moody, Tyler's aunt, reported that the call from Children's Mercy Hospital came about 1:30 a.m. on Aug. 26 after a wait of more than 15 months. "Please keep David, Trish, Tyler, and (older son) Matthew in your prayers," she wrote in an online message. "This will be a very anxious couple of days and a very long few weeks as he recovers."
This is Tyler's story.
• • •
David Barker's sharp, blue-and-yellow No. 88B Rocket Chassis is covered with snazzy vinyl graphics that make modern Dirt Late Models so eye-catching. But when they talked about the family-owned race car's appearance for 2008, David's wife wasn't necessarily concerned about giving sponsors the best bang for their buck, about the fancy colors — or even if the race car looked fast. Trish wanted a single question to pop in mind when fans and fellow competitors see David's machine on a Missouri dirt oval: "Why is a baby's face on that car?" | Follow Tyler's progress | Slideshow | Excerpts from Trish Barker's online journal
The answer? The Barkers are doing everything they can to save their young son's life.
Since Tyler was diagnosed with a rare liver disorder 18 months ago, the Kingsville, Mo., family of four has been in a race for the 21-month-old's health that overshadows any O'Reilly Midwest LateModel Racing Association race Barker has attended since becoming a series regular in 2001. Obscure facts about biliary atresia, lengthy hospital stays, fund-raisers, IVs, tearful nights and prayers for good health have become a part of life for Trish, David, Tyler and his 6-year-old brother, Matthew.
But instead of putting David's racing on hold — after all, dirt racing is what brought David and Trish together on a fateful night at Savannah Speedway near St. Joseph's, Mo., 10 years ago — they've used the race car to help encourage others to consider becoming organ donors.
"You just kind of hope that throughout the race season, maybe you can open the eyes of one person to the need of organ donations," said 38-year-old David, the 2001 MLRA Rookie of the Year who races locally since Tyler's birth. "Just from what we've dealt with, we've learned quite a bit about it and the fact there's so many people that don't understand how the organ donations actually work."
The Barkers, knowing that young Tyler's health will continue to deteriorate without a transplanted liver, have become painfully aware of how the system works, however slowly. Every phone call offers the potential that Children's Mercy Hospital in Kansas City is summoning the family for a transplant, a call that came in February when Tyler was a backup for a potential recipient. The first child was able to receive the donor liver, and the Barkers have continued their wait ever since, although Tyler's health has been more stable in recent months.
"That was quite upsetting when you think you're going to have a chance at something like that, and then you're told no," Trish, 37, said. "Even though you want it for the other kid, it was a huge letdown. ... I guess we live just day to day, but you still wonder when he's going to start turning downhill with his disease."
• • •
Sometimes, people who don't know Tyler are surprised to see such a small child walking. Because he's unusually small for his age — "He might not even be on the chart for height," Trish said — others mistakenly think he's too young to walk. But Tyler's stature is merely among many complications of biliary atresia, a disorder that strikes one child among 10,000-15,000 births and is the reason for half of all liver transplants.
Tyler's abdomen is swollen, infections are a constant worry, bruising comes easily, simple fevers can trigger a health crisis and he can display a yellowed, jaundiced appearance that first signaled the disease a few months after he was born on Nov. 7, 2006.
All seemed well after Trish came home from the hospital with Tyler. Like his older brother Matthew, Tyler was an easy baby to care for and didn't fuss much. The lingering jaundiced appearance troubled the Barkers and, even after doctors OK'd him at a two-month checkup, they went back for reassurance. At 11 weeks old, Tyler was diagnosed with the disease, which doesn't allow bile to drain from the liver, causing the liver's hardening and eventual organ failure.
"They explained what they thought it was, and I guess I was still in denial and not fully understanding this disease I had never heard of," Trish wrote in an online journal she uses to update family and friends. "We thought 'OK, if this is it, there is a surgery they can do, we will be OK and we go on with the rest of our lives.' After his liver biopsy it was confirmed what they had suspected: biliary atresia. That afternoon, Dr. Andrews and Angela, a hepatology nurse, came in to tell us the results. They would be doing (surgery). It wasn't until he said, 'This is the beginning, not the end,' that it all hit and it wasn't a quick-fix surgery. After they left the room, we cried."
The surgery, called the Kasai procedure, re-establishes the bile flow and improves the health of some children born with the disease, but it wasn't successful for Tyler. Since then, he's been put on a transplant list and doctors have fought to keep Tyler as healthy as possible through some difficult stretches. He's on 12 medications, most of them twice a day. He's had more than a dozen lengthy hospital stays and has faced the discomforts of IVs, feeding tubes and other medical procedures that leave Trish feeling helpless.
"Our poor baby has been poked and prodded more than anyone should have to be," Trish wrote after they left the hospital last December before Christmas. "His IV went bad yesterday afternoon, so they gave him is antibiotic last night by a shot, then this morning they had to start an IV to sedate him. After she looked, she said the only place left was the top his foot. His arms have been used up from his hands to his armpits."
• • •
It was 1998 when Trish went to Savannah Speedway and met her husband-to-be. Trish was helping her brother Jim Morris, who borrowed a rear end for his street stock from David. Trish thought that David was awfully generous, and when she found out he was single, she wasn't shy about getting to know him better.
"He said most of his girlfriends wouldn't last very long because they wanted to go out to eat or go to the movies on Fridays and Saturdays," Trish recalls. But she didn't mind hanging out with David at the race shop or skipping traditional dates for a dusty Saturday night with her boyfriend at the racetrack. That clinched it. They got married in September 2000 and they've been a fixture on the Kansas City area racing scene ever since with Trish just as excited about racing as David. "Now I think I push him harder than he wants to go himself sometimes," she said.
David raced modifieds about nine seasons, averaging about a victory per year, before moving up to Late Models in 2000. He planned to run with MLRA that year, but a broken transmission forced him to miss two early-season races. He joined MLRA full time in 2001, capturing the Rookie of the Year title and finishing fifth overall in series points. He didn't win a series race, but a four-wide frontstretch pass to take the lead at Thunder Hill Speedway in Mayetta, Kan., has always been a highlight for him. He remembers asking Trish after the race: "How'd I even pass those guys?"
The Barkers raced with MLRA most every season since, but they've raced closer to home the past 18 months because they must head to Kansas City at a moment's notice if a donor liver is available. A new all-steel motor from Hatfield Racing Engines allows David to race at weekly United Late Model Association events — he won his first 2008 feature on Aug. 17 at Lucas Oil Speedway in Wheatland, Mo. — and still be competitive in occasional MLRA touring shows.
When word got out last year of the significant medical costs the family faced with Tyler's $250,000 transplant looming, the racing community responded. Local tracks passed helmets to collect donations. MLRA raffled jackets and other racing items to raise money for Tyler. Proceeds from rides in a two-seat Late Model were donated to the family. Dallas Moody, Tyler's aunt, and others arranged a fund-raiser and auction of donated items last October at the Elks Lodge in Blue Springs, Mo., that drew nearly 500 people and raised $70,000.
"To have the number of people they had there, the racing community, track owners, officials, the sponsors and everything, it was awesome," said Tracie Badder, the wife of Missouri racer Shad Badder and a close friend of the Barkers. "A lot people donated different things from the racing community, sides of (race) cars and stuff. It was just amazing they were quick to do that. ... it made them feel so good to believe that there were people out there to help."
"It was unbelievable the outpouring from the racing community," Trish said. "You read about other people's stories, bad times and everybody pulls together. ... but when you're the one on the receiving end and seeing it happening to you, it's a completely different feeling of emotions. (Racing) is tight and people do care about other racers, and they'll do anything they can to help you. I don't think you'd get that if you played softball somewhere, or some other sport. I don't think you'd get that outreach. ... We feel blessed to have all the friends in racing that we do."
Racers always want to beat each other on the track, David said, but just like if someone breaks something in the pits, other racers are there to pitch in when a racer is in need.
"Once the competition part is over with, how the racing community really pulls together to help each other out, like something that we're going through now," he said. "To go through what we've gone through with Tyler, it's really pretty overwhelming when people will go out of their way to help you. ... It made you realize how special the sport of racing really is."
Tyler's stamina doesn't allow him to go to the races often, but Trish sees racing in her younger son. "He is definitely going to be the shop rat and the race car driver," she wrote in her journal after a recent trip to the track. Even if Tyler isn't with the Barkers, a race doesn't goes by without competitors stopping by in the pits to ask how things are going.
"It makes you feel good when you see them there. Then you at least know things are in a holding pattern," said Harriet Chancellor, co-owner of MLRA. "If (David) wasn't there, then you'd really worry."
MLRA regular Larry Clawson of Kansas City says his heart goes out to the Barkers. "They're pretty private people, but they're going through a lot. You just do anything you can for them. Every time you see them race, you'll see both Trish and David holding the kids while the other one is doing something else (on the car)," he said. "They're pretty tough. You never see them down in the dumps or anything like that. I think it aggravates (David) some that he doesn't get to put as much effort into the racing that he does, but he's pretty much rededicated his main focus to Tyler, and he's got another son, too, that he's gotta take care of."
David Barker, who works at the family-owned Richardson Printing in Kansas City, knows that some people might wonder how a family accepting donations for medical bills can afford to continue racing, but he makes sure that "every dime for that race car pays for itself," he said. "We don't take any money out of our pocket to pay for it, and we haven't in the past six years." Parts deals and sponsorships along with David's moonlighting with body and fabrication work helps offset costs, he added.
"I've thought about that a lot, but then again, we thought if we should shut down, we would do nothing but sit around and think about what we're headed toward with (Tyler). ... and believe it or not, the racing is kind of our outlet in dealing with the stress we have in dealing with Tyler, a way to deal with our personal problems, I guess you could say. Our family doesn't suffer because of it, so I don't worry about it too much."
• • •
Tracie Badder remembers last year when Trish wasn't comfortable with the public part of Tyler's illness. "It took a lot for Trish to open up and tell her story," Badder said. "She almost felt like she was begging for help, but she wasn't. ... she is so reserved with that and she didn't think people would be willing to help them out."
But Tracie Badder — who was high school friends with David, while her husband Shad was high school friends with Trish — and others have seen Trish inspired to become a public advocate for organ donations. "Now she's out there, 'Hey, let's do this,' or 'Let's do that.' And it's not just to help her child, it's to help everyone."
Trish overcame her nerves to serve as a public speaker for the Midwest Transplant Network, which used Tyler's story in seminars and meetings. "They like to use him to show that this is the other side, these are the people that we're helping, in trying to get people to become an organ donor," Trish said.
Along with family members and friends, Trish set up booths at racetracks last year, handing out literature explaining how to become an organ donor and "trying to promote organ donations just as much as trying to raise money for Tyler," she said. It was a natural to use the side of David's car to spotlight the "Be An Organ Donor" logo that touts how organ donors can save eight lives. They put the logo on the car last season, but decide to expand it larger on the door panel for 2008.
Graphic artist Robbie Musick used a picture of young Tyler along with the logo. Underneath, it reads: "Are you an organ donor? You could save a life!"
"I wanted to do more this year, so we did the the picture and said, 'Are you an organ donor?' " Trish said. "The picture I thought would grab some people and make them stop and see it. It's kind of unusual to see a face on a car. At least maybe somebody will think about it and save somebody's life someday."
David is glad his race car can be part of something so important. "You just hope you can bring the awareness to people and make one or two people think about it and realize what they could do to help people out, if something were to happen to them," he said. "It's always kind of neat when people come up and ask us about it. It makes you feel like you're actually doing something good for people."
Trish wonders if their ability to reach others could be "some good reason of why this has happened to our family," she said. "Not everybody races in front of hundreds of fans every weekend. ... If we have an opportunity to spread some awareness, we might be able to more than another person."
• • •
The Barkers have been through a close call for a transplant. The hospital summoned them in early February when a donor liver became available, and doctors weren't certain the first child on the recipient list was healthy enough to receive the liver. Tyler was No. 2 on the list, and the hospital needed to have him prepped for surgery just in case. Trish, in her online journal, asked for prayers for the three families involved. The Barkers waited nearly 24 hours before learning the first recipient was cleared for transplant. While the experience gave them an idea what's in store for Tyler's transplant day, it was difficult for Trish.
"I find myself looking at Tyler in a different way and feeling more sorrow that I, his mother, the one that is supposed to make everything better, has to watch him get sicker before he can get that life-saving liver," Trish wrote in her journal. "This is such a cruel disease. It is a slow, progressive disease, so you have no choice but to live the days, weeks, and months watching your child suffer and there is nothing you can do but wait. I try to remind myself that it is all about God's timing and his plan, but I am really having a hard time right now."
The near-transplant also put Trish on edge about when the next call would come. She had to remind herself to be patient. "Every time the phone rings, I've just gotten back in the mode that it's not going to happen for a while, so I don't freak out every time the phone rings," she said.
David does his best to help Trish through the tough times, just as she helps him. "I would say we both lean on each other," David said. "She will pull us together at times, and I kind of pull us together at times. More often her than me. She'll have days where she worries about it more than I will. .. we just sit down and talk together and try to help each other out with everything. I don't see any way any one parent could go through this on their own."
Leslie Clawson, the wife of racer Larry Clawson, admires the couple's bravery. "A lot of people are pulling for them, that's for sure. We've all got our fingers crossed that they have a transplant for him pretty soon," she said. "I think they're very brave to face all that, that's for sure. How do you know what you'd do until you're in those shoes?"
When they're racing at the same track, Leslie Clawson sometimes spends time with Trish in the pits, talking to her about Tyler's health or listening to Trish talk about how she sometimes feels guilty for focusing so much attention on Tyler instead of her older son Matthew, who just started first grade.
Tracie Badder said Matthew, who stays with a grandmother during hospital stays, plays well with his young brother and is "such an understanding little boy with everything going on. ... When he knows his brother is sick, he knows maybe he's not going to get all the attention."
Until the day the transplant comes, much of the attention will remain on a little boy loved by his tight-knit family, friends and many who have raced with the Barkers over the years.
"You can just see the love in both of their eyes for that little boy. He is so special," Tracie Badder said. "(Trish) has strong faith in God and I think for the both of them, it helps them get through what's going on, is that faith. ... I just can't imagine doing what they're doing, but they handle it so well. It's going to be difficult and it's scary. ... They know that even though they don't know what to expect, their family, friends and the racing community will be right there."
