Defying the odds: Cruise’s triumph against cavernous malformations and debilitating headaches
As a toddler, Cruise — now 13 — faced a rare cancer diagnosis that came with an 11 percent chance of survival. But with his trademark resilience and strength of spirit, Cruise defied the daunting odds and beat his cancer. The battle left its mark though — in the form of cavernous malformations in his ... Read More about Defying the odds: Cruise’s triumph against cavernous malformations and debilitating headaches
Cerebral palsy hasn’t stopped Irvin from living large
Irvin, now 18, became fascinated with sports mascots when he was a little kid. What did they do, and could he do that too? Anytime he had an appointment at the Cerebral Palsy and Spasticity Center at Boston Children’s Hospital, he and his mother would stop by Fenway Park to visit Wally, mascot of the ... Read More about Cerebral palsy hasn’t stopped Irvin from living large
‘Another level of care’: Second opinion solves Joey’s rare urologic condition
When Max and Shana arrived at Boston Children’s Hospital last year with their young son, Joey, their care team “made us feel a lot less special,” says Max. “And that was a great thing.” Joey was born with megacystic-megaureter syndrome, a urinary tract anomaly that is caused by high-grade vesicoureteral reflux, or the backward flow ... Read More about ‘Another level of care’: Second opinion solves Joey’s rare urologic condition
Family first: Nolan and Uncle Jon’s living donor kidney transplant
Nolan and his uncle Jon are both tall and blonde, but they now have something more in common: The two have an unbreakable bond, thanks to a selfless —and lucky — gift that changed Nolan’s life forever. The first year after Nolan was born, his primary care physician ran some blood work to try to ... Read More about Family first: Nolan and Uncle Jon’s living donor kidney transplant
All eyes on retinoblastoma: How Lyla and her mom are helping change lives
Meghan Landry firmly believes that art saved her daughter Lyla’s life. Now, she hopes to leverage the power of creativity to help support other kids like Lyla, who was diagnosed with retinoblastoma at 18 months old. Meghan, who lived in Florida at the time, was waiting with Lyla for a routine pediatrician appointment when she ... Read More about All eyes on retinoblastoma: How Lyla and her mom are helping change lives
‘Life is so much better now’: Ethan finds treatment for mixed germ cell brain tumor
Ethan Winchenbach was playing with his dogs when he first noticed that something was off. “My vision changed, but only when I looked down,” he remembers. “It was really disorienting.” His mother, Becky, who is a nurse, knew immediately that something wasn’t right. When the symptoms didn’t improve, she made him an appointment with his ... Read More about ‘Life is so much better now’: Ethan finds treatment for mixed germ cell brain tumor
Emmie’s journey with type 1 diabetes and celiac disease
Emmie knows more about her own medical history than most children her age. Her journey to finding answers started when she was just 4 years old. She woke up one day looking “like I ate a bunch of blueberries or blackberries — my lips were turning blue,” explains Emmie, now 7. Her mom, Amanda, wasted ... Read More about Emmie’s journey with type 1 diabetes and celiac disease
DADA2: Working together to unpack a rare mystery illness
When Vanessa was a few months old, a mysterious red, bumpy rash appeared on her arms and legs. It would go away when she was sick with a virus, then come back. Although the rash disappeared for good just before she turned 2, Vanessa became anemic and increasingly fatigued. “She was fading away, losing weight, ... Read More about DADA2: Working together to unpack a rare mystery illness
Breaking records and setting goals: Grant charts his own course with Bockenheimer syndrome
Grant Pierce has his sights on premed when he arrives at the University of Illinois this fall. He hopes to become a reconstructive surgeon and help people with injured or ill limbs enhance their mobility. Grant’s field of study is a personal one, as he’s spent his life in and out of the hospital receiving ... Read More about Breaking records and setting goals: Grant charts his own course with Bockenheimer syndrome
How Josie’s bad day turned into a campaign to help kids with scoliosis
Josephine DeFilippi (Josie) describes the day of her scoliosis diagnosis as the hardest day of her life. Right when she was looking forward to middle school, ten-year-old Josie was shocked to learn she had a condition she’d never even heard of before. On that same day, however, an unexpected gift from someone she’d never met ... Read More about How Josie’s bad day turned into a campaign to help kids with scoliosis