Adam takes a pause from his active life for non-ossifying fibroma
Adam was 11 in early 2024 when he and his bike slid under a downed tree. Such events aren’t unusual for Adam, who finds plenty of opportunities to test the limits of gravity near his home in Southern Maine. “Adam is the epitome of activity,” says his mother, Jessica. After the bike incident, however, he ... Read More about Adam takes a pause from his active life for non-ossifying fibroma
Choosing fetoscopic spina bifida care for Hadley
When Katie and Derek learned in 2024 that their daughter Hadley would be born with spina bifida, they quickly set out to find the best care available. And as so often happens in parenting, their most important decision was to trust their instincts. Doing so led them to be among the first in New England ... Read More about Choosing fetoscopic spina bifida care for Hadley
A world of difference: Why Noah traveled from Florida for multiple sclerosis care
When Noah started having headaches four years ago, his mom, Jonda, initially wondered if it was a classic kid ruse. “I thought maybe he was trying to get out of doing chores,” she remembers. But when the headaches got worse and even his eyes hurt, she brought him to their local emergency room in Florida. ... Read More about A world of difference: Why Noah traveled from Florida for multiple sclerosis care
An unbreakable bond: Brothers turn medical complexities into superpowers
“Look! Is that one JetBlue? I think that one’s Delta!” Running through the grass, climbing on the jungle gym, and watching planes take off and land at nearby Logan Airport: Castle Island in South Boston is Patrick and Teddy’s happy place. The brothers, ages 4 and 3 respectively, are almost as obsessed with airplanes as ... Read More about An unbreakable bond: Brothers turn medical complexities into superpowers
Team spirit: How working with an allergy psychologist got Amber back to cheering
A bubbly high schooler with lots of friends and a passion for competitive cheerleading: On the surface, Amber’s life looks perfect. She even knows what she wants to be when she’s older — a cosmetologist, because she wants to help people feel their best through beauty. Her determination to help others is what drove her ... Read More about Team spirit: How working with an allergy psychologist got Amber back to cheering
“Princess June” reigns supreme over Rasmussen syndrome
What do you call a “girly” 5-year-old who adores dolls and frilly nightgowns? If you’re one of June Pelletier’s nurses at Boston Children’s Hospital, the answer is “Princess June,” of course. While Her Highness would much prefer to reign over her parents and three siblings at home in Connecticut, she’s no stranger to the hospital. ... Read More about “Princess June” reigns supreme over Rasmussen syndrome
Thanks to Carter and his family, people are talking about spastic paraplegia
Nine-year-old Carter may be the most devoted — and popular — sports fan in his Connecticut town. “He loves all sports,” says his mother, Natalie. Whenever one of Carter’s buddies has a game, Natalie’s phone lights up with texts asking if he can attend. As his friends play, Carter cheers and gives high fives from his ... Read More about Thanks to Carter and his family, people are talking about spastic paraplegia
Knowing what life is worth: I am an adult heart patient and much more
Most of the children showed off a favorite toy. Some brought items that were meaningful to their family or culture. When I got to the front of my kindergarten class, my hands were empty. “My show-and-tell is…me,” I exclaimed as I pulled up my shirt and bared my chest to an audience of shocked five-year-olds ... Read More about Knowing what life is worth: I am an adult heart patient and much more
“A setback for a comeback”: Brody perseveres with Paget-Schroetter Syndrome
Baseball has been part of Brody Walsh’s story from the very start. Now 19 and a college sophomore, Brody pitches for the Thomas College Terriers baseball team. But his path to this point has not been easy, to say the least: Just two years ago, a serious medical condition threatened his pitching career. Faced with ... Read More about “A setback for a comeback”: Brody perseveres with Paget-Schroetter Syndrome
Tough cookie: Steroid therapy helps Alessandra thrive with Diamond-Blackfan anemia
Two-year-old Alessandra is many things. She’s sweet, happy, curious, and, according to her parents, Ralph and Irma, a budding food critic. “She’s a food snob!” Ralph says, laughing. “She recognizes the expensive pasta, the homemade versus store-bought food.” But above all, Alessandra is resilient, and her parents have known that from the very start: At ... Read More about Tough cookie: Steroid therapy helps Alessandra thrive with Diamond-Blackfan anemia