Lily Rancourt takes the school bus home each day and meets four of her five siblings when she gets off the bus. Their father, Jacque, often welcomes them and they all walk home together until a short distance from their Bristow, Virginia, residence. Then, they race.
They want to see who’s the fastest. But this daily race means even more to 8-year-old Lily. She wants to run because just a few years earlier, she was barely able to move.
Lily was born in Mongolia. When it was discovered that her heart was half the size it should be, upside down, and on the wrong side of her body, doctors there didn’t know what to do, Emily Rancourt, Lily’s adopted mother, told Runner’s World. Lily was diagnosed with hypoplastic left heart syndrome—along with several other complications because of this—had two open heart surgeries, and was labeled terminal before she was even 3 years old.
That’s when Emily and Jacque Rancourt found her. They were looking to adopt, but never felt ready to bring another child into their home to join them and their two biological daughters. That was until Emily came across a Facebook post of a girl with pigtails and a major heart defect.
“This girl needed a family and we wanted to be that family,” Emily said.
In 2012, the Rancourts brought Lily home from Mongolia and another girl, Mackenzie, now 9, who was from Shanghai. At first when Lily was brought to the U.S. at almost 3-years-old, they got the same message from cardiologists all over the country—“This girl is complicated.”
Emily thought she’d get the same response when she emailed Lowell Frank, M.D., a cardiologist at the Children’s National Medical Center in Washington, D.C. Thankfully, the response there was different from the rest.
“We got a reply so quickly,” Emily said. “Everyone else is saying she is terminal, and then this cardiologist at Children’s National says we can help her. We were so happy to have someone who was optimistic and hopeful for our girl.”
This didn’t mean Frank had the answers, but he was able to solve one major problem. During one of Lily’s initial heart surgeries in China, a shunt was placed on her heart. However, the doctors had not taken into account that Lily’s heart was backward, so they placed it on the wrong side. Another heart surgery fixed the problem, and though it didn’t cure her, it gave her time.
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In the first few years with the Rancourts, Lily was never home for more than 10 days. To keep herself from giving up, Lily needed a reason to live, a goal to strive for.
“I thought about running all the time because I couldn’t get out of my hospital bed,” Lily told Runner’s World. “I could see people run and play but never got to do it myself. I wanted to be able to run with my sisters, not just watch them run and have fun.”
With this in mind, they vowed to get her a heart transplant. A surgery was risky after three open heart procedures, but if Lily had a chance at a life not in the hospital, this is what would have to be done. Lily was initially denied a transplant by three transplant centers because of her complex anatomy, but then, on one final request, Lily was approved as a top priority recipient for a transplant by Dr. Janet Scheel, who was based at Children’s National at the time, and the waiting began.
The wait ended three months later when Emily was lecturing at her job as an assistant professor of forensic science at George Mason University in June 2014. Her phone buzzed a few times, but she ignored it. She later checked her voicemail, and it was the doctor. If they wanted Lily to get the transplant, they needed to get to Children’s National right away.
The heart became available because of a boy named Parker. He was 2-years-old. He was walking to the mailbox with his sister at their home. According to the Parker’s family, he turned around, smiled at his mom, let go of his sister’s hand, and took two steps into the street where he was hit by a car. His mother revived him with CPR, but he’d need life support the rest of his life. Parker’s parents instead allowed the organs to be used for transplants, which saved four individual children’s lives.
Emily rushed home and drove Lily to the hospital, where they had to wait longer than expected for the heart because it was in transport and had hit weather delays. Emily and Jacque watched as the helicopter carrying the heart landed on the helipad. Then the dangerous surgery began.
As we kick off Heart week today, I couldn’t think of a better way to begin than with a photo that says a thousand words . . My new car tags arrived in the mail yesterday! Without our Hero Parker, Lily’s story would have ended very differently. There would have been no lost teeth, no school, no running, no play dates with friends, no jumping rope to support the AHA, no riding her bike – there would be no Lily Grace. . What Congenital Heart Disease (CHD) tried to destroy, God redeemed. Not a day goes by that our family doesn’t speak his name or pray for his precious family. We love you Parker forever and always #chdawareness #donatelife #heartwarrior #hope #chd
A post shared by Emily Rancourt (@emilydalerancourt) on Feb 7, 2018 at 6:13am PST
“We had spent three years getting to know this girl and we loved her,” Jacque said. “When we handed her off, we didn’t know what was going to happen. It was agonizing.”
For hours they waited, until they got a message: Lily’s body accepted the heart. It was deemed one of the most complicated transplants ever done given her organs mirrored where they should be and because Lily had only one lung. But she survived, and the recovery could begin.
* * *
It took four months before Lily came home from the hospital. She required constant attention, so Emily and Jacque had to go through extensive training to properly care for their daughter who would be hooked up to oxygen tanks and other machines at home. Even then, they still needed a nurse nine hours a day.
Emily was exhausted, physically and mentally.
“My mother said go for a run,” Emily recalled. “She said it would be a good outlet and help clear my head.”
As Emily ran, the nurse and Lily would wait in the driveway and cheer for mom as she came in. On one run, months after the surgery, Lily wanted to join her mother. With Emily carrying the oxygen tank, she made it 100 feet. Over time, that turned into 500 feet. After a checkup with her doctor, new boundaries seemed possible for Lily.
“The doctor asked if Lily wanted to do the Race for Every Child,” Emily said about Children’s National’s 100-yard dash for kids. “He said it was no longer than the hallway, and Lily said, ‘I can run farther than that hallway.’”
Instead of the 100-yard dash, Lily decided to do a 5K in October 2015. With her mother beside her pushing a stroller carrying Lily’s oxygen tank, they slowly made their way across the course. Lily would often have to stop and be pushed in the stroller, but when she ran, she loved it. She crossed the finish line, received her medal, and she was hooked.
A post shared by Emily Rancourt (@emilydalerancourt) on Oct 31, 2015 at 7:11am PDT
“I felt so proud of myself that I could do it,” Lily said. “Everyone believed in me. It was amazing how many people were there, my doctors and nurses. I wanted them to be proud because they helped me feel better. I loved crossing the finish line. It was the best ever.”
Since then, Lily has improved leaps and bounds. She no longer requires the oxygen tank and completed her first 5K on her own this past October. This earned her the title of ambassador for the hospitals Make March Matter campaign. But Lily has even bigger plans for her future.
“I want to run longer. Maybe like a half marathon,” Lily says. “I want to get more people to run with me to raise more money to help other kids.”
While she continues to build up her stamina, she’ll continue to be active, remembering that she couldn’t always do this.
Her brother, Thaddeus, 6, is the latest addition to the family. He, too, has a heart defect and needs to be wheeled between classes because he can’t make it by himself. That doesn’t stop him from following in Lily’s footsteps by wanting to stay active.
That’s why without fail when they get off the bus, Thaddeus takes off with his sisters, Lily out in front, leading the way and running with all her heart.
heart surgery to running 5k