26.2 for three: A transplant nurse’s tribute to her patients

pediatric transplant
Desh and Lucas

Heartbreak Hill: It’s the notorious Boston Marathon landmark that runners both anticipate and dread. But when Deshanthi “Desh” Perera approaches that challenging climb on April 16, she’ll have special motivation propelling her uphill. Perera, a nurse working on the organ transplant inpatient unit of the Pediatric Transplant Center at Boston Children’s Hospital and first-time marathoner, isn’t just running for the glory of a personal best time or the satisfaction of completing the race. She’s running for all of the remarkable patients at Boston Children’s, including three of her own.

miles for miracles
Desh shows off the names on her singlet. The fourth name, Dinesh, belongs to her late brother.

Perera first met her patient-partner Lucas St. Onge when he was a very sick little boy, anxiously awaiting a multivisceral transplant to address complications from short bowel syndrome and its treatment. “I couldn’t believe all of his medical knowledge at such a young age — he totally understood the care he was receiving,” she remembers. “Then I realized Lucas had spent more time at Boston Children’s as a patient than I had as a nurse at the time.”

She’s kept up with him over the past few years, as he received a five-organ transplant on his fifth birthday and later returned to Boston Children’s for follow-up care. When choosing a patient-partner for her first marathon, Perera knew that he would be a perfect fit. “Lucas immediately came to mind,” she says. “He’s such a ball of energy and pure joy.”

Lucas and Desh

Time well spent

Perera isn’t the now-7-year-old’s only fan — and she’s had some stiff competition for his attention. “A while ago, Lucas said, ‘Desh, you’re my girlfriend,’” she chuckles. “It was so touching — and then I found out that he has about 200 other ‘girlfriends,’ just at the hospital!”

Exclusivity aside, the two do have a special relationship that’s grown along with Lucas. Where once Perera helped him pass time in the hospital by playing games and doing puzzles, she now enjoys spending time with him at patient-partner events. “I don’t know that he necessarily grasps that he’s been such a motivating factor for me running the marathon,” she says. “But he knows that this means we get to spend more time together, and that’s exciting to him.”

max on his tractor
Desh’s former patient Max

Every step of the way

While Lucas and his family will be cheering Perera on from a water stop along the 26-mile route, he isn’t the only child she’ll be carrying in her heart that day. In addition to Lucas, her marathon singlet boasts two other patient names. One belongs to Max, a gentle, sarcastic and loving teenager who underwent a multivisceral transplant after a liver resection to treat cancer. “He’s one of the funniest people I’ve ever met,” says Perera of the teen, who expresses his passion for tractors on his own YouTube channel. “He calls me ‘Dash’ because I’m always buzzing around — I love that.”

lindsay transplant
Desh’s late patient Lindsay taught her what it means to “fight like a girl.”

The third name, Lindsay, honors a young patient who passed away while waiting for a donor liver. “She loved watching Moana and always wore a big smile, even though she endured more in her brief lifetime than most adults ever will,” Perera recalls. “When she passed away, I told her mother that she taught me what it means to fight like a girl — and that she’ll be with me every step of the way.”

multivisceral transplant

A whole new chance at life

As part of Boston Children’s Miles for Miracles team, Perera is helping raise money to support groundbreaking research and lifesaving clinical care — but she’s also running to raise organ donation awareness. “I checked off the ‘organ donor’ box when I got my driver’s license because that’s what my mom told me I should do,” she says. “But other than your driver’s license, organ donation isn’t really something most people think about. I want to change that.”

Through her work on 10 South’s Organ Transplant unit, Perera has seen firsthand the impact that organ donation can have. “I can only imagine the difficulty of having that conversation and making that type of decision as a parent who has lost their child. No parent should ever have to experience that,” she says. “But to see the flip side — to see kids told that they wouldn’t survive be given a whole new chance at life — that is the most beautiful, selfless thing I’ve ever seen. That is my inspiration to run and spread organ donation awareness.”

Learn more about milestones made possible #becauseofadonor and register your decision to donate life.