Everywhere Melissa Villaseñor goes her little sister, Isabella, follows.
The 6- and 2-year-old share just about everything. They share big personalities. They share a love of being lively and loud. And, they also share something else — they were both born with biliary atresia.
“I am not going to lie,” says Andrea Torre, the girls’ mom. “I sometimes break down and cry and ask myself, ‘Why me?’”
Biliary atresia is a chronic, progressive liver condition that is fatal if left untreated. For most parents, having just one child with this rare, life-threatening disease is overwhelming.
“My husband keeps me grounded,” she says. “He reminds me, ‘See how much they fight for their health? We have to fight twice as hard.’” …
Dawn Cavanaugh carefully and calmly navigates the roads of Shrewsbury, Massachusetts, with a bus full of kids, bringing them to school and safely back home again at the end of each day. As a bus driver, it’s the methodical beat of her everyday life.
Last year, as a mom, she was navigating a very different journey, one in which she did everything in her power — including giving a portion of her liver — to bring her daughter Lydia home safely.
“As far as I’m concerned, my role in this life is to care for my kids,” says Dawn. “And if I have to give a part of myself to do that, that’s all there is to it.”
We are honored U.S. News & World Report has named Boston Children’s Hospital the #1 pediatric hospital in the U.S. As we celebrate this honor, we’re reflecting on some of the greatest children’s stories ever told — stories of the patients and families whose lives touch ours and inspire us.
Two of those patients are “liver brothers” Malambo Mazoka-Tyler and Brent Groder.
Malambo and Brent are, by all standards, oceans apart.
Zambian-born Malambo is nearly two. His world, one year after a life-saving, split-liver transplant, is all about walking and talking, laughing and dancing and figuring out why the sky is blue and why cows moo — a typical toddler. …
It is late in the evening on June 14, 2015. Kern Tyler and his wife Pasina Mazoka-Tyler sit in a waiting room at Boston Children’s Hospital, while their 11-month-old son Malambo Mazoka-Tyler, born with a life-threatening disease called biliary atresia, undergoes a liver transplant.
To arrive at this moment, they have traveled vast distances, visited multiple hospitals, sought the advice and counsel of numerous doctors, packed all their belongings and moved more than 7000 miles from their home in Zambia, Africa, to Boston, Massachusetts.
He had picked out what he wanted to wear, where he wanted to be buried, and he told me, ‘My soul is all I have left. If I don’t have a liver, I am going to die.’
Yet, they call this journey a blessing.
In the same room, a family from Maine patiently waits, while their son is prepped for his liver transplant.
Born with cystic fibrosis, 18-year-old Brent Groder is battling end-stage liver disease. Just two months earlier, he was planning his funeral, recalls his mom Charlene Newhall. “He had picked out what he wanted to wear, where he wanted to be buried, and he told me, ‘My soul is all I have left. If I don’t have a liver, I am going to die.’” …