February 4, 2014

Living with a gift, and shining a light on organ donation

Luke Harbur, who received a donated liver when he was a baby, knows that our days are not to be taken for granted. His family’s mission is to educate the community about organ donation, and former Belton Mayor Phil Duncan has joined the cause.

Some people know Phil Duncan as the former mayor of Belton. Others know him as a former alderman there, as a Kansas City Power Light Co. employee for more than three decades, or as a longtime Missouri Army National Guard member.

For the past five years, still others have come to know him as an organ and tissue donation educator who proudly wears a pin designating him as an organ recipient.

On June 23, 2007, Phil Duncan got a new heart.

“I was so close to checking out of this world,” he tells students at Raymore-Peculiar High School on a drizzly Friday morning. They’re gathered in the library, sitting at tables and on the floor right in front of him, listening to the story of his near-death experience — and the donor who saved him.

Duncan calls himself “an old boy from the school of hard knocks,” but the illness that led to his heart transplant may have been one of the biggest knocks he had to endure. He suffered from cardiomyopathy, a weakening or dysfunction of the heart muscle. Duncan recalls sitting at home after feeling progressively worse for a few days and calling 911 for himself because he knew something bad would happen if he didn’t check into a hospital — fast.

Duncan has told this story many times over the last few years. He makes presentations to high schoolers with Gift of Life, an organization founded by Kim and Nate Harbur. Kim quietly walks around the library stacks, watching as Duncan tells his story.

The Harburs were forced to understand the issue of organ and tissue donation when they were told their youngest son, Luke, needed a liver transplant at the age of 5 months. Their case became a high-profile news story in Kansas City: They were the first local family to receive a pediatric liver transplant as a result of a joint effort between Children’s Mercy Hospital and the University of Kansas Hospital.

But beyond Luke’s ongoing medical care because of the transplant, the family has made education and awareness about organ donation their life’s work. Kim and Gift of Life volunteers go into high school classrooms just like this one to talk to teens about what organ donation really means. Gift of Life volunteers also mentor patients who need transplants. The organization has been recognized over the years for the work it does, most recently by the Johnson County Library Foundation with its Pinnacle Award.

Gift of Life reached out to Duncan in August 2008, more than a year after his transplant. When they showed him the map of about 60 schools where the organization had outreach programs, Duncan couldn’t find programs in Cass County. Using his connections — he’s been a county resident since 1976 — he added more high schools to Gift of Life’s roster.

Duncan also is involved with the Midwest Transplant Network, the organ procurement organization in Kansas and western Missouri that acts as a conduit between organ donors and recipients. He speaks to many organizations, hosts booths at health fairs and takes part in parades, telling his story time and time again.

“Everybody ought to be educated on this topic for their own good,” he said. “I never had the chance when I was growing up.”

The transplant has changed his priorities, Duncan said. The little things so many of us complain about every day just don’t matter so much to him anymore. He’s gotten the chance to meet people and connect — many times because of a conversation struck up when they notice his pin. Duncan coincidentally met a good friend of the man whose heart he received this way.

“You can’t measure this by dollars,” he said. “There’s no way to measure it except by satisfaction.”

Kim Harbur would likely agree. She knows that students this age often have newly minted driver’s licenses — a fact reinforced by the number of hands that go up when Kim asks who’s already driving. She wants to educate teens about one of the decisions they’re asked to make before they’re handed their cards: Do you want to be a donor?

Kim knows that, statistically, 75 percent of the students she talks to today will say yes to the question she’ll ask them, and 25 percent will either say no or remain undecided. But whatever their answer is, they’re right in Kim’s book.

She uses large boards to show the students which organs and tissues can be donated. She talks about the difference between donating after death and while still alive. Kim balls up her fists and holds them to her lower back to demonstrate where the kidneys are.

She asks the students why some people choose to donate and why others don’t, which leads to questions about religion and spirituality. Regardless of what the students believe, though, Kim reinforces that they’re all right.

These classes go far beyond the little red heart on driver’s licenses.

Meet the Harburs.

There’s Nate, a father and an attorney who has his own practice that handles primarily civil and commercial litigation and personal injury cases. He’s been working in the legal field in the Kansas City area since 1977.

Then there’s Kim. She grew up in Olathe, graduated from Stephens College in Columbia with degrees in physical education and dance and ran her own dance studio for 25 years. She taught 3-year-old “tiny tutus,” high school seniors and every age in between. At its peak, the studio had about 500 students.

“I was always a teacher at heart,” she said. “So I have transitioned from the dance teaching world into teaching students. It’s just a different topic. My style is very similar in both settings, and for me to walk out of a classroom and know I’ve made a difference is very powerful.”

The couple’s first son is Cole, who’s 19 and turning 20 in April. He’s a graduate of Pembroke Hill School and currently a sophomore at Elon University in Elon, N.C. He’s majoring in entrepreneurship and minoring in environmental studies, and his younger brother calls him “one smart, smart kid.”

He’s a little quieter than Luke, and Kim says he’s “tenderhearted” and a “good listener.” He shares a love of music with his brother — Cole sings in an a cappella group at Elon.

And finally, there’s Luke, the baby of the family. He’s a high school senior studying drama at the University of North Carolina School of the Arts High School Academic Program, which accepts only 26 drama students — 13 boys and 13 girls — each year. Just four of them come from outside the state.

Luke’s a newcomer to Winston-Salem, N.C., from Olathe — specifically, Olathe East High School, where his love of theater led him to participate in a summer workshop at the school before applying there for his final year before college.

“I wanted to go because I wanted to ask my question constantly: Do you want to be an actor, and do you want to make a very large financial investment to get an acting” degree, Luke said.

He now is considering pursuing broadcast journalism in college. He’d love to be a correspondent for CNN or a “smiling face” on “Good Morning America.”

“As long as I’m doing a job that’s helping people, entertaining people or at least being a turning point in their day, that’s what’ll really count in the end,” he said. “If I could pick my top goal in life, I would love to be the next Jimmy Fallon/Oprah.”

It’s clear he’s cut out for that kind of career when he presents to other high schoolers with his mother, as he did at Blue Valley Southwest during his winter break.

He has a personality that Kim describes as “very big in life.” Yet he’s humble and personable and warm, too. As an artist, Luke commends audiences for sharing hours of their day to watch a performance. That’s the kind of person he is.

He says one word sums up his attitude toward life: optimism.

“I guess like any human being, we go through our ups and downs, but in any down that I’ve been through, there’s always some brighter light about it because there are things you can learn from every single experience,” he said.

He’s keenly aware that he’s been given a second chance at everything.

“A goal just isn’t a goal,” Luke said. “It’s something that I have to strive toward. I have to go get it.”

Having a second chance changed how he lives.

“It’s completely brightened my life.”

“I believe our messes in our lives become our messages,” Kim says at the beginning of her presentations. “Sometimes our failures are what become our successes.”

Her “mess” happened in 1995, when Luke was diagnosed with liver failure as an infant. Within months, the parents were told that 5-month-old Luke needed a transplant to survive.

“It was presented in a clinical way that made it even harder,” Nate said. “We didn’t know anything about transplantation. It sounds like extremely complicated surgery. We started reading and trying to figure it out.”

Six months later, an 8-year-old Olathe boy named Aaron was on a family camping trip in rural Missouri when he suffered an allergic reaction that closed his throat in 30 seconds. By the time he reached the hospital in Springfield, he had gone about 30 minutes without oxygen.

The testing told his family that Aaron’s condition wasn’t going to improve and that he’d likely remain in a vegetative state. His parents and grandparents met with doctors that evening. Aaron’s dad, Kris Drake, asked the neurologist point-blank whether the man had a son, and what he’d do if this were his child.

“I would probably pull the plug, because there’s no hope,” the neurologist told the family.

The Drakes were told that Aaron could donate only one kidney until he was brain dead, which would likely happen two or three days later. The family waited, wanting to give Aaron every chance he had. They wanted him to be able to donate his other organs, too.

Kris had thought about organ donation before, when a friend’s father was ill and died waiting for a heart transplant. Kris knew he wanted to be an organ donor.

The next day, the phone rang for the first time in Aaron’s hospital room. Puzzled, Kris took the call from a nurse and heard the voice of a chaplain from the Drakes’ church. Aaron’s Sunday school teacher knew of an 11-month-old boy in Olathe who needed a liver.

The teacher also happened to be a client at Kim Harbur’s dance studio.

Kris and his wife, Melody, didn’t know much about direct donation, but after meeting with organ donation representatives the next night and holding another family meeting, they agreed to see if Aaron was a match for the 11-month-old, who was first on the transplant waiting list in Kansas City.

Blood tests taken at noon the following day showed that Aaron Drake was brain-dead. The tests were repeated around 4:30 p.m.

The Drakes made the long trip home to Olathe in silence that evening. Kris remembers “just driving and praying.”

“I kept asking God, ‘Why do you do this?’ 

” Kris said. “I know there’s a purpose, what is it? God basically said organ donation is like my gift of salvation. You can’t buy it. You can’t earn it. It’s simply a free gift. I thought, ‘Wow. That’s really powerful.’ 

That’s how the Harburs see organ donation — as a gift. The tragedy of the situations organ donors and their families face is apparent, Nate said.

“It was a very humbling experience to go through,” he said of Luke’s transplant. “Gift of Life was our way of really trying to take that experience and make it work toward the positive.”

Looking back, Kris says even though the situation he was thrust into certainly wasn’t one he would have chosen, he can see purpose.

“It’s just great to see all the people who benefited from it and really to see how that one thing led the Harburs to have this passion,” he said.

It’s been almost 18 years since Aaron Drake donated his liver and Luke Harbur had his life-changing transplant. In that time, organ and tissue donation groups in the Kansas City area have taken significant strides toward educating people before they might be forced to make donation decisions. While Kris and Kim both say Gift of Life can’t take all the credit, the organization has helped make a big difference in the community’s awareness about donation.

“We’ve heard anecdotal stories about how people have become donors because of something they heard about us or Kim’s program,” Nate said, shaking his head and smiling. “When you think about a life being saved, it makes you feel great.”

Kris has served on Gift of Life’s board, including as president. Kim and Nate look to him for his input to help keep the representation of experiences on the board balanced. He’s spoken at annual events in schools and at nursing programs. He’s been at the vast majority of events Gift of Life has hosted.

The organization is now part of who he is.

“It’s part of my fabric,” Kris said. “It’s what God asked me to do.”

And as recently as 2008, Kris again saw the impact of organ and tissue donation. He broke his tibia after a skiing accident, and the bone he received from a donor helped him walk again.

Donation “is absolutely critical to someone else’s survival,” he said. “Your loved one is gone either way. You can’t bring them back. It’s whether you’re going to take your tragedy and make it someone else’s miracle, or whether it’s going to be a total tragedy for everyone.”

The idea for Gift of Life was sparked when Nate and Kim were confronted with Luke’s transplant and realized they knew very little about how the process worked. Nate says he had a “knee-jerk reaction” to the topic of organ donation — it was something he just didn’t want to think about, and the Harburs realized he wasn’t the only one who felt that way.

After Luke’s procedure, Kim was asked to be a mentor for other parents who had children in a similar situation at Children’s Mercy.

“I wanted to help, but when I went down there, I was a mess,” Nate said. “I got very emotional.”

So he suggested they start a foundation to educate people about donation. Nate and Kim began making phone calls and put together a board of directors. From 1998 to 2000, their first project was the installation of a fountain at the Stowers Institute for Medical Research in honor of Aaron Drake. The Harburs donated the centerpiece, and the fountain bears a plaque telling the families’ story with Aaron and Luke’s handprints cast on either side.

Gift of Life’s Life Savers program, which takes the message of organ donation education into high schools, started with conversations among groups of high schoolers in the Harburs’ living room. It began moving into schools around the region, and now, Kim and Gift of Life volunteers go into more than 90 of them each year. Last year, Kim says, she educated 26,000 students.

The Life Savers program is modeled after an initiative begun by Robert Redford’s son, James Redford, who had a liver transplant about the same time Luke did. The younger Redford’s foundation, the James Redford Institute for Transplant Awareness, focuses in part on educating teens about organ donation as they get their driver’s licenses. Gift of Life collaborated with James Redford early on, Nate says.

The entire organization was headquartered in the Harburs’ basement for six years, but Gift of Life moved in December 2004 to a north Overland Park office building, a floor down from one of its partners, the National Kidney Foundation.

Gift of Life now has 17 board members and a little more than 190 volunteers — 40 who are trained to give classroom presentations and about 100 who are trained to mentor transplant patients.

The organization partners with the Midwest Transplant Network, the organ procurement organization in Kansas and western Missouri. The network’s CEO has been on Gift of Life’s board for about a year. The city’s hospitals, particularly the transplant hospitals, also team up with the organization.

Today, the large dry-erase wall calendar in Kim’s office is packed — only a few days don’t have a school visit penned in. She goes into high schools that have full-body searches for weapons, private schools, juvenile detention centers and even a school in a rural community with a total of 29 students and a graduating class of eight.

As parents, Kim says, she and Nate didn’t hover over their sons. Especially Luke.

“I didn’t want him to feel different,” she said. “So we just plugged him into the system and let him go. I remember a few people saying, ‘I can’t believe you’re going to send him to school with all the germs or do some of those activities where you throw him into the masses.’ But I thought it was important for him to do that so he wasn’t in a bubble.”

Luke was released to do essentially any physical activity he wanted when he was 6 years old. He was in a church play that sparked his love of the arts. He tried his hand at sports in middle school with track and field — including sprinting events and the long jump — and basketball.

“I have no restraint whatsoever, especially going to this new school,” Luke said. “I have to take dance classes. I have to work out every day.”

And his days are long. From 8 a.m. to 10 p.m., he’s in academic classes, arts classes and rehearsals. He gets lab work done on his blood at the school’s health center. He takes medication — once on a regimen of 17 pills a day, Luke’s now down to two pills in the morning and two in the evening.

He says that as he got older, the transplant and its after-effects — the medication, the labs, the visits to the doctor — all became part of life as usual. Questions about his scar or why he’s so cheery all the time are easy to answer.

“I got a second chance to do everything that I do,” Luke said. “It’s pretty hard not to smile at least once a day.”

Luke says one of the most poignant memories he has is playing Charlie in “Charlie and the Chocolate Factory” when he was 10 years old — and not just because it helped spark his love for the arts.

“My donor family was there,” he said. “After, I ran up to them and was bawling and just kept saying, ‘Thank you.’ I’m a very emotional person in general, but as a 10-year-old realizing something that pretty darn deep — it’s rung with me, and I’ve never forgotten it.”

The Harburs are very close to the Drake family. Aaron was a middle child; he had two siblings, Tim and Kayla Drake, who were 9 and 6 years old when Aaron died. When Tim got married, Cole and Luke walked Melody Drake, the mother of the groom, down the aisle. Melody easily brushed aside the wedding planner’s qualms about having two people escort her — that’s just the way she was, Kim says.

Melody died on March 20, 2012 — Luke offers up the date without hesitation. A week before, Luke read her a poem he’d written for her. When Melody met with Kim to talk about her services later that week, she asked straightforwardly that the poem be read at the funeral.

Now, Kris is engaged to a “lovely, lovely woman,” Kim said. The Harburs just had them over for dinner.

Kris says he tries to meet up with the Harburs a few times a year for dinner, just to talk. His son and daughter are both married now — his son has a 2-month-old, and his daughter’s first child is due in June.

“Luke is a recognition that there was something positive that came from the tragedy,” Kris said. “There was a plan, a purpose. To think about taking someone’s child who would’ve died — now here they are, an adult going to finish high school and start college and all the things in life that we all look forward to.”

And Luke isn’t the only life Aaron touched. His heart went to a young man in Cape Girardeau, Mo. Both of his kidneys were donated — one to a woman in her late 30s, whose mother wrote Kris a letter but remained anonymous. Aaron’s other kidney was donated to a woman in her 60s who lived to spend time with her grandchildren, Kris says.

Kim doesn’t take a stance when she’s talking to students about organ and tissue donation. In the Harburs’ book, the decision to donate organs or tissue is an individual choice. But for them personally, donation coincides with their spiritual beliefs — and it’s made them more comfortable discussing difficult end-of-life issues.

“What’s great about (donation) is that it crosses all nationalities, races, religions, socioeconomic statuses and everything else,” Nate said. “It’s very universal and nondiscriminatory.”

Luke has heard terms associated with organ and tissue donation throughout his life. He’s encountered people who have a variety of opinions on donation — and all of the discussion has made him more comfortable talking about death.

Looking ahead to the nearer future, he knows beginning the next phase of his life will pose different challenges for him.

“I just really need to keep being responsible when college rolls around,” Luke said. “Social life can really kick off, and you’ve got to really consider when you’re taking your meds. You’ve got to get your labs done.”

And when he gets even older, just paying for it all is something to think about, he says.

But as he climbs the stairs and walks into the bedroom of the same house he came home to after his transplant, pulls out his ukulele and begins to strum and sing so his voice echoes in the foyer, it’s clear that Luke fully believes a phrase he often repeats.

Life is good.

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