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
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
Not just another patient: Care for midaortic syndrome that’s ‘handcrafted’ for Iris
This past July, Iris Huot, her older sister, Audrey, and their parents, Jessica and Austin, gathered around their dining room table. To an outsider, it might seem like an ordinary dinner, but for the Huots, it was a moment of perspective — and gratitude. “It was the first time in eight weeks that we had ... Read More
From medical first to marathon finisher: Corey’s ACL story
Corey Peak’s role as a “medical first” began on a ski slope in 2015 when he tore his anterior collateral ligament (ACL). He remembers falling and hearing two pops. “One side was my binding releasing. The other side, I later realized, was my ACL tearing.” Thirty days after his accident, Corey would become the first ... Read More
Thinking – and operating – outside the box: Bypassing Saoirse’s aneurysm
Saoirse just turned 3. There was a big to-do for her birthday, complete with family flying to Massachusetts from Ireland for the occasion. The celebration was big because Saoirse has a lot to celebrate. About six months ago, doctors discovered an unstable aneurysm in her brain, and within days she underwent surgery to treat the ... Read More
How transnasal endoscopy got Jamie back on the golf course
Jamie is like most 15-year-olds — he goes to school, hangs out with his friends, and still makes time to get outside to play some golf and baseball. However, when Jamie was having bouts of throwing up and getting food stuck in his throat, he and his mom, Tricia, knew it wasn’t just a case ... Read More
Overcoming microtia, atresia, and speech challenges: Braelyn’s story
Eight-year-old Braelyn is a sweet, confident kid who loves everyone, dotes on her little sister Kamryn, does well in school, and never stops moving. Her parents, Danielle and Joseph, are incredibly grateful to see their daughter happy and thriving, especially after the long road it took to get here, including pharyngeal flap surgery and ear ... Read More
Virtual visits give Weston time to grow and thrive
For many kids and parents, staying home during the COVID-19 pandemic was a challenge. But for Weston Mahady and his family, social distancing was just what the doctor ordered. The slowed-down pace, time spent together — and access to virtual appointments with Boston Children’s specialists — allowed Weston to make developmental strides that once hadn’t ... Read More
A family’s search for answers and hope for PACS1 syndrome
Alya, 9, was about three weeks old when her mother, Taruna, noticed movements and behaviors she was concerned might be seizures. What followed were multiple hospitals, multiple tests, and eventually a diagnosis of PACS1 syndrome. This rare genetic neurodevelopmental disorder can lead to intellectual disabilities and delays and currently has no cure. “We were told to ... Read More
One day on the field, admitted to the ICU the next: Rob’s liver transplant journey
When you’re a teen, it’s not very common to worry about what’s going on inside your body — especially not about potential organ failure. For Rob, now 14 years old, that happened in the blink of an eye. One day, he was scoring goals in soccer and hanging out with his friends. But in just ... Read More