7-year-old 'Miracle' Survivor Runs 'Race for Every Child'

Lily Rancourt, 7-year-old of Bristow, will run her second 5K, Oct. 1, “Race For Every Child” to support Children's National Health System in Washington, D.C., the same hospital which saved her life when there appeared to be no hope.

Last time we covered a story on Lily, it was 2014. She was terminally ill and receiving a visit from Princess Elsa around Christmas, courtesy of the Sweet Julia Grace Foundation, which grants wishes to dying children.

By several accounts, it is a miracle Lily is even alive today. Hers was among the most complicated pediatric heart transplants ever performed in the U.S., but Lily’s journey began in China.

Lily was born with an extremely rare condition. She was born with half of a heart that was upside down, backwards and on the right-hand side of her chest. On top of that, all her organs were on the reverse side of her body. Lily’s medical condition resulted in her living in an orphanage.

Thanks to a U.S. non-profit organization, Lily was able to have two life-saving surgeries while still in China. However, due to her unique anatomy, the surgeon in China placed a shunt on the wrong side of her heart. Nevertheless, the surgeries managed to extend her life.

Lily immediately after surgery (left) and after recovery (right.)

After the second surgery, the orphanage was told Lily was terminal. However, the director still had hope for the spirited little girl and listed her for adoption.

Emily and Jacque Rancourt were looking to adopt a healthy Chinese girl when they met and fell in love with Lily. They decided to adopt her despite being told she was “terminal.” As her parents, they were determined to do everything they could to save her life.

Since moving to the U.S., Lily had several open-heart surgeries and has spent 380 days in the hospital.

At the age of four, doctors thought there was nothing more they could do. The Rancourts began to brace themselves for that reality that Lily would die; still, they never stopped hoping and praying.

“Lily was initially rejected for a heart transplant,” Emily said. “We tried to have her listed for a transplant at three different hospitals, but she was so unique and they didn’t think she would survive.”

Just before her fifth birthday, Lily’s lips were very purple, and the Panda Team, a Hospice for children, had begun caring for her. That is when the cardiologists at Children's National decided to try one more time for Lily. “Alright, give me 24 hours to present her to the transplant board again,” her doctor told the Rancourts.

Lily training for the 2016 5K over the summer on her new Hello Kitty bicycle.

To attempt the surgery, Lily would require a donation of both heart and pulmonary arteries. This would be difficult to acquire since the pulmonary arteries are typically donated along with the lungs, not the heart, but Lily’s unique anatomy required new arteries as well.

The doctors at Children’s National Medical Center pleaded Lily’s case a second time, and she was finally listed for a heart transplant. After three months on the waiting list, a donor match was found whose lungs were damaged but had a heart and pulmonary arteries intact.

In a short  time, the doctors at Children’s National performed the heart transplant as Lily’s parents waited with bated breath. They breathed a sigh of relief as the new heart began to beat in Lily’s chest.

Lily spent the next few months recovering, first in the hospital and then at home. During that time, she was on oxygen and was unable to play outside. The Rancourts did all they could to keep Lily and their other children, some of whom also have medical issues, occupied and happy.

Meanwhile, Lily’s grandmother had begun running marathons at the age of 60. She would visit and show the family her medals, often times giving them to Lily and her siblings.

Lily racing ahead of her mother who was holding her oxygen tank during last year's 5K race.

Soon, Emily began running as a way to relieve stress and would take Lily along in her stroller. Then, Lily wanted to run too, so Emily would let Lily run a little bit before placing her back in her stroller.

At six years old, Lily’s health was improving. Her cardiologist asked her if she would like to run the children’s dash at the 2015 “Race for Every Child.” Upon hearing it was just a short sprint, Lily said, “I can run farther than that.”

“She got in her head that she can run the 5K,” Emily said.

The doctor gave the okay, saying it would be good for Lily as long as she remains on oxygen and had a chance to rest in her stroller. Her family assisted, and last year, Lily successfully completed her first 5K with mom running beside her, holding her oxygen tank.

Now, Lily is off oxygen and excited about running her second 5K, “Race for Every Child,” Oct. 1.

“I’m gonna be free!” Lily said, telling her mom that she and her oxygen tank will no longer hold her back.

Emily too is enthusiastic about the race, but mostly she is amazed by how far Lily has come in two short years. She calls it a “rebirth a life.”

Jacque is also amazed.

“It’s funny watching her. She doesn’t even know how special her story is because she’s just busy now being a normal kid, and for me that’s the biggest treat of all, watching her doing what she wanted to do after spending months lying in a hospital bed,” Jacques said.

Lily looking healthy after recovery.

The family calls Lily’s new heart a “hero’s heart” in honor of the child and family who made the brave decision to donate their child’s organs so that Lily could have renewed life.

“Lily went from being blue and unable to walk to pink lips, and she’ll come running in the door after school today,” said Emily. “She has boundless energy.”

Lily’s story is the reason the family is so passionate about participating in the “Race for Every Child.”

The whole family is joining in, no matter how difficult it will be. While the girls can run on their own, this year, Jacques will have to carry their son, Thaddaeus, who also has a severe heart condition. Grandma and other relatives will be running a long as well. As for Papa, he will be slowing his pace.

Jacques, who used to be a personal trainer, admits he is super-competitive, but this year he wants to run alongside his family.

“I’m still struggling with the fact that we’re not going to win, but I feel like in this situation we’re winning in a different way, seeing her face light up,” he said.

Jacque said their goal is to inspire others either to run or to donate because it is such an important cause to help  children, like Lily, receive a second chance at life.

Lily playing on the slide in her basement that was built for her and her siblings when she was unable to play outside.

In that way, he said it’s not about who wins the race. “I feel we will beat something even more significant.”

This year, the Rancourts have joined with the medical center’s cardiology team called “Don’t Miss a Beat.” For their part, they hope to raise $3,000 in Lily’s name. Thus far, they have raised $2,000.

This year, Lily plans to dress as Wonder Woman as she runs her race.

Readers can help “Team Don’t Miss a Beat” and all the children receiving care at Children’s National Health System by donating at Lily’s fundraising page, or by participating in the 5K and Kids’ Dash.