Writing the book on infantile spasms: Charlotte’s story
When Charlotte, 3, developed infantile spasms last year, her parents, Kate and Brett, entered a world they didn’t know how to navigate. Inspired by their daughter and the care she received at the Epilepsy Center at Boston Children’s Hospital, they set out to help other families facing similar experiences. Nervous parent instincts prove right “I ... Read More about Writing the book on infantile spasms: Charlotte’s story
How hearing aids opened up a world of sound for Harry
Maybe it’s unusual to bring a musical instrument to an audiology appointment, but that didn’t stop Harry King. When he picked up his new hearing aids from Boston Children’s Hospital, he brought his ukulele. After a procedure to drain fluid from his middle ears the year before, Harry had become obsessed with sounds of all ... Read More about How hearing aids opened up a world of sound for Harry
All in the family: One family’s shared link to epilepsy and fight for answers
One of the wonders of parenthood is seeing the traits you pass along to your kids, like your eyes or your laugh. For the Anderson family, however, one shared trait is more complex: a mutation in the NPRL3 gene that leads to epilepsy. It took four generations to uncover the family’s genetic link to the ... Read More about All in the family: One family’s shared link to epilepsy and fight for answers
Lessons from Emma: Mom shares how RNS has changed their lives
Emma’s journey with the Epilepsy Center at Boston Children’s Hospital began three years ago when she came to Boston Children’s with her parents for help managing her seizures. In Boston, Emma, Lynda, and Danny found answers to their questions, a (temporary) new home, and hope for Emma’s future as she embarked on responsive neurostimulation (RNS) ... Read More about Lessons from Emma: Mom shares how RNS has changed their lives
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 about From ECMO to an active childhood: Nolan’s journey with congenital diaphragmatic hernia
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 about Don’t forget the cheese, please! Rachel’s EoE journey
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 about How genetic testing helped Wilson help other infants with epilepsy
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 about How one diagnosis brought together three best friends: Allyson, Maddy, and Caiya’s journey with pancreatitis
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 about Chloe navigates Marfan syndrome with a positive attitude — and a responsive care team
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 about Homecoming: Jack’s complex care brings a family back to Massachusetts