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Transplant Talk

Patient Spotlight

Fall 2012: Lily Savoy & Grace Kobold

"You spend all that time in school learning about presidents and what they do, but to actually meet one of them in person was really cool."
Grace, age 16

Boston Children's Hospital Transplant CenterIt's not every day a second-grader can offer advice to a teenager. But 7-year-old Lily Savoy would like to impart some wisdom upon 16-year-old Grace Kobold, which she hopes will help Grace in her current role as Massachusetts representative of the Children's Miracle Network (CMN), an organization that raises funds and awareness for all the important work being done by children’s hospitals.   

"Have fun," says Lily. "And in Disney World, don't forget to say hi to Mickey."

"Enjoy the time while it lasts," adds Lily's mother, Lori, who spent 2011 speaking at CMN events about Lily's battle with biliary atresia, and her eventual liver transplant at Boston Children's Pediatric Transplant Center. "It's an incredible experience, and like so many good things it feels like it's over too soon."

Each year the CMN picks a representative from every state (known as a Champion) and arranges speaking events in the person's home state. At these events the Champion or a family member will talk about their personal battle with disease or injury, and the role children's hospitals played in their recovery. Lily was the representative for New Hampshire in 2011, and Grace for Massachusetts in 2012. Grace was born with dilated cardiomyopathy and a hole in her heart. She underwent open-heart surgery at a year old, and received a heart transplant in 2010.

Boston Children's Hospital Transplant CenterAfter campaigning in their individual areas, all 51 Champions and their families are flown to Washington, D.C., where they tell their stories to members of Congress to remind them of all the important work children's hospitals do, and ensure that federal funding for those institutions remains intact. On this year's trip Grace had a special opportunity, a meeting with the president of the United States, and first puppy, Bo Obama.

"It was pretty overwhelming to meet the President," Grace says. "You spend all that time in school learning about presidents and what they do, but to actually meet one of them in person was really cool."

But being a CMN rep isn't all campaigning and speeches. After their meetings with government officials, the Champions and their families are treated to a private chartered flight, provided by Delta Air Lines, to Orlando, Fla. (An experience Grace says may have been the highlight of the trip, even after her time with the commander in chief. "It was great. No lines, no security checks, or any of that," she says. "We just rolled up on the tarmac and got right on the plane—like rock stars.")

Once in Florida the Champions meet CMN sponsors, hospital representatives and media partners for a Once in Florida the Champions meet CMN sponsors, hospital representatives, media partners for a Walt Disney World celebration and even pop star Jordin Sparks. "It's humbling to see just how many people are involved in the organization, and how hard they work to promote the CMN," says Grace's mother, Julie. "I'm just glad we can be a part of it in some way."

Lori shares Julie's appreciation for the hard work of the CMN team, as well as the opportunity she and her family were given when Lily was picked as a Champion.

"Being the CMN representative was such an honor," she says. "Lily is just one person, but she represents the tens of thousands of kids that are treated every day at places like Boston Children's or at children's hospitals. The fact that we could speak on their behalf was wonderful. We'd do it again in a heartbeat if we could."

Boston Children's patients are often chosen as CMN representatives for the New England states, but to have two consecutive Champions chosen specifically from the Pediatric Transplant Center is a unique situation, and one that the team from Boston Children's is very proud of.

"Having two of our patients named as back-to-back representatives for a national organization like CMN is a rare and special honor," says Laura O'Melia, RN, MSN, CPNP, director of Transplant Nursing. "It really reinforces what many of us have felt for a long time—the Pediatric Transplant Center is a special place, working with terrific families, and together we're all capable of doing some pretty amazing things."