Stories about: Pediatric Transplant Center (PTC)

My blue-eyed boy: The decision to donate life

Aidan the chefHot, humid air arrived that last week in June 2014. Our family was looking forward to a summer of entertaining, barbecuing and sharing our newly built patio with friends. Spending time as a family hiking, traveling or just hanging out at home was important to us. Aidan was ready to head off to a three-day goalie lacrosse camp. It was something he had begged to do all winter long.

Aidan loved life and he lived it with passion. Aidan or AJ, depending on who you asked, had his future completely planned. He played basketball, swam and skied. As a Boy Scout, he had spent many days camping and hiking throughout New England and he worked each day delivering the local paper on his bike. In the winter, he loved to create huge, elaborate snow forts. On vacations, he and his two siblings were thrill-ride junkies. He loved to draw and doodle.

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6 ways to celebrate National Donate Life Month

Each year, during the month of April, National Donate Life Month draws attention to those who have saved and healed lives through the gift of organ, eye and tissue donation. Here are six simple ways to participate, celebrate and educate.

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Become an organ donor.

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  • Register to be a donor at registerme.org.
  • Designate “organ donor” on your driver’s license.
  • Visit transplantliving.org to learn more about becoming a living donor.

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Paying it 26.2 miles forward

Tom Williams, a liver transplant recipient, crosses the Boston Marathon finish lineThere is a spot on the Boston Marathon route called “The Liver Mile.” It’s where the grind begins, where the storied course starts to tests runners and where legs often weary from pounding 16.8 miles of punishing roads.

Yet, it’s also where 21-year-old Tom Williams, a liver transplant recipient from Dracut, Massachusetts, first fell in love with the idea of running the Boston Marathon.

“I wasn’t thinking about the difficulty of it,” he says. “I was just thinking, I want to run for other people who are sick.”

Located in front of Newton-Wellesley Hospital, “The Liver Mile” is where volunteers hand out water and gather in support of the Run for Research team, which raises money to benefit the American Liver Foundation. For years, while someone else ran for him as part of the patient-partner program, Tom was a spectator on the sidelines.

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Mending a ‘backward’ heart

Joe, who has congenitally corrected transposition of the great arteries , sits with his dog OdieThe first clue came with a murmur.

At a mere week old, Joe LaRocca was diagnosed with an extraordinarily rare heart defect. Both ventricles were reversed.

Fortunately, with this particular defect, the arteries are reversed too, essentially “correcting” the abnormality. That’s where it gets its name — congenitally corrected transposition of the great arteries (CCTGA).

In a normal heart, the demanding duty of pumping oxygenated blood into the body is handled by the left ventricle, and the right ventricle pumps blood a short distance into the lungs. But Joe’s heart was far from normal.

“The right ventricle is not meant to do the harder work,” says Dr. Elizabeth Blume, Heart Failure and Heart Transplant Program medical director at Boston Children’s Hospital. “Since the ventricles are reversed in patients with CCTGA, over time, this muscle tires out.”

For the past three decades, the team at Boston Children’s Heart Center has medically and surgically managed Joe’s condition. And at 33, his heart is still ticking.

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