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. …
I was born on January 29, 1992 with a birth defect called gastroschisis, which meant that my intestines extended outside my body through a small hole in my abdominal wall. I received a liver, small and large bowel transplant in December of 1992, just before my first birthday. Though I was transplanted in Pennsylvania, I have been cared for by the brilliant team at Boston Children’s Hospital ever since.
When I was first recovering in Pennsylvania, my parents were told that I would never be able to swim in the ocean because I would have to have a central line in for the rest of my life. Well, to that person I would like to say:
I have swam in two oceans.
As 2-year-old Naema Alshehhi turns the pages of her favorite book, her eyes glimmer with curiosity. Sitting with her father, Àbdulla and big sister, Dana, in their temporary Boston apartment, the inquisitive toddler points to a number of shapes and is fascinated by the rainbow of color.
During this quiet moment, you see the gentle outline of Naema’s central line through her tiny shirt. The lifesaving tube — surgically inserted into her chest — provides the nourishment needed to manage the rare intestinal disorder she was born with, called microvillus inclusion disease (MVID). The condition, which causes severe diarrhea and an inability to absorb nutrients, requires specialized parenteral nutrition (PN) and intravenous hydration support at home.
For the Alshehhi family, however, “home” is over 6,600 miles from Boston. …
When Lucas St. Onge blew out the five candles on his birthday cake, he made just one wish. He didn’t ask for ninja turtles, a T-ball set or an Xbox — the only thing he wished was to be just like any other kid.
“It was a gift I couldn’t give,” says his mom, Heather.
On that same day, last May, he got his wish.
“He got a liver, stomach, pancreas, intestine and spleen — the five organs he needed to help him become healthy and happy,” Heather says.
Heather was 18 weeks pregnant when she and her husband, Anthony, learned they were about to face a myriad of medical challenges with their unborn child. To what extent remained unclear, until the day Lucas was born. …