From ECMO to an active childhood: Nolan’s journey with congenital diaphragmatic hernia
Nolan Griffin knows how to use a stethoscope and rarely enters Boston Children’s Hospital without his medical kit. But Nolan isn’t a doctor — at least not yet. For now, the busy 2-year-old is a patient in the hospital’s Congenital Diaphragmatic Hernia Center, where he’s been receiving care since before he was born. Although Nolan’s ... Read More
Don’t forget the cheese, please! Rachel’s EoE journey
Like many teens, Rachel loves cheese and other dairy foods. “Cheese sticks, yogurt, and especially pizza,” Chellie, her mom, shares. Rachel agrees: She would eat cheese every day if she could. Up until this past spring, Rachel, who also has autism spectrum disorder, was unable to enjoy her favorite foods due to incredible pain in ... Read More
How genetic testing helped Wilson help other infants with epilepsy
In August 2021, after months of anticipating their son’s arrival, Emily and Nick felt as ready as they’d ever be to become parents. Happy and excited to finally have Wilson in their arms, they brought him home a few days after delivery. Just over 24 hours later, though, they found themselves back in a hospital ... Read More
How one diagnosis brought together three best friends: Allyson, Maddy, and Caiya’s journey with pancreatitis
Allyson, Maddy, and Caiya are your typical tween best friends — sharing inside jokes and constantly chatting about everything and anything. “They’re always on FaceTime talking and laughing,” shares Kim, Maddy’s mom. “They just love each other.” You’d never guess that these three girls didn’t meet at recess, but rather through Dr. Amit Grover, director ... Read More
Chloe navigates Marfan syndrome with a positive attitude — and a responsive care team
Chloe Burian has always defied expectations. Despite surgeries and other treatments for several conditions that stem from the genetic disorder Marfan syndrome, the 12-year-old remains upbeat. “Nothing bothers her,” says Chloe’s mom, Audrey. “She goes through life with a smile.” Still, there were moments of doubt along the way, especially when Audrey and her husband, Rudy, ... Read More
Homecoming: Jack’s complex care brings a family back to Massachusetts
Georgia and her husband, Keith, moved to North Carolina from Massachusetts in 2015 with a dream of building a house and starting a family. Their plans changed, however, when their son Jack was born in 2017 with severe health complications, including a rare and severe form of childhood epilepsy called Lennox-Gastaut syndrome and a rare ... Read More