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.’” …
There 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. …
Cameron Grubb likes to shoot Nerf guns, and even his own doctors aren’t immune from his aim — in fact, they often fire back. It’s a playful act that everyone welcomes, however, particularly since this 6-year-old has defied the odds multiple times in his young life.
Just three years ago, Cameron was struggling to survive after being diagnosed with extremely high blood pressure — so elevated, in fact, that his clinicians in Kansas thought the monitor must be broken. When they eventually confirmed the reading, it was 170/140, a dangerous level that sent him to the local intensive care unit for nine days. …