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Denver asleep in the NICU

Changing the world: Baby Denver leads the way after first-of-its-kind procedure for VOGM

Patient Stories
Denver Coleman is less than 2 months old, but she’s already helped blaze a trail for other children and families, a feat she accomplished before she was even born. Denver, who was diagnosed with a vein of Galen malformation — a type of rare blood vessel abnormality inside the brain — in utero, is the ... Read More about Changing the world: Baby Denver leads the way after first-of-its-kind procedure for VOGM
Tagged: brain health, fetal medicine, MFCC, surgery, vein of galen malformation
Trevor, who had hip impingement in both hips in an Ironman competition.

One athlete, two hip surgeries, three Ironmans

Patient Stories
Trevor Spence grew up playing just about every sport he could. When he was 3, he laced up his first pair of hockey skates. When he was 10, he medaled in the Junior Olympics 1500-meter Track and Field event. Throughout middle and high school, he travelled to tournaments for hockey, lacrosse, and soccer. “I did ... Read More about One athlete, two hip surgeries, three Ironmans
Tagged: hip impingement, hip preservation, orthopedics, sports injury, sports medicine
A heartwarming image of Colleen and Niamh beaming as they smile at the camera.

Inspired by her daughter, one mom helps families navigate complex epilepsy

Patient Stories
Colleen Gagnon felt something wasn’t right soon after her daughter Niamh was born but tried to convince herself she was just overthinking. Fighting her instincts as a nurse and second-time mom, Colleen tried to link the dimple in Niamh’s forehead and darting eye movements to her being born six weeks early. But an eye doctor’s ... Read More about Inspired by her daughter, one mom helps families navigate complex epilepsy
Tagged: epilepsy, microcephaly, neuroscience, seizures
Conner, the first CCALD patient to receive Skysona outside a clinical trial, flexes his muscles.

Making history: Gene therapy for CCALD gives Conner a second chance

Patient Stories
Like a lot of 6-year-olds, Conner Hess finds joy in simple acts: drawing pictures, cuddling his two cats, and playing video games with his father. When his fun times at home in New York are interrupted by trips to Boston Children’s Hospital, he knows it’s to help fix a “boo-boo” in his brain. What he ... Read More about Making history: Gene therapy for CCALD gives Conner a second chance
Tagged: adrenoleukodystrophy, gene therapy
Ben stands with his hands in his pockets in front of a waterfall

Running the Boston Marathon with a purpose: Ben’s liver transplant journey

Patient Stories
Ben is no stranger to sports — in fact he’s probably the most excited when he’s able to get on a soccer field or with his team. This April, he’ll be running alongside the Boston Children’s Hospital team at the Boston Marathon! At 18 years old, Ben has already overcome incredible challenges, so taking on ... Read More about Running the Boston Marathon with a purpose: Ben’s liver transplant journey
Tagged: complex care, liver disease, transplant
Sami smiles wide with a tracheostomy tube in his neck

‘Sami’s trach helps him breathe’: Living with laryngeal cleft

Patient Stories
Today, Sami is a playful toddler with so much energy that his parents need to remind him to take breaks. It’s a big change from just four years ago when he struggled to eat, drink, and breathe before being diagnosed with a laryngeal cleft. Sami’s parents, Ala’a and Mohamad, knew before he was even born ... Read More about ‘Sami’s trach helps him breathe’: Living with laryngeal cleft
Tagged: laryngeal cleft
Emily jumps in the air with her arms and legs out like a star.

We didn’t give up hope: Emily’s fighting chance with her lung transplant

Patient Stories
Emily lights up every room she’s in with her giggles and confidence — not to mention her sparkly painted nails and glittery makeup. At 6 years old, she’s able to win people over with her bright smile and electric personality. All this is made possible because Emily was given the gift of life — an ... Read More about We didn’t give up hope: Emily’s fighting chance with her lung transplant
Tagged: complex care, interstitial lung disease, pulmonary hypertension, transplant
Chad in sunglasses and his daughter, Izzy -- in a stroller -- smile before run.

How Robin sequence paved a dad’s road to the Boston Marathon: Chad and Izzy’s story

Events, Patient Stories
Go to any marathon starting line and you’re bound to find someone who was “never a runner” until something — or someone — motivated them to tie up their laces. Chad Goyette is one such runner. But today, he’s fresh off the Atlanta Marathon and gearing up to run Boston. His inspiration? His daughter, Izzy. ... Read More about How Robin sequence paved a dad’s road to the Boston Marathon: Chad and Izzy’s story
Tagged: cleft palate, craniofacial, feeding therapy, nicu, physical therapy, Robin sequence
A man with facial differences smiles at the camera while standing outside on a sunny day.

Decades in the making: JR’s journey with craniofacial care

Patient Stories
Last fall, JR Foley posted on Facebook to thank members of the Craniofacial Program at Boston Children’s Hospital for seeing him through corrective jaw surgery. The post wasn’t JR’s first note of thanks, and it wasn’t his first surgery, either. JR’s been receiving care at Boston Children’s Hospital for more than 30 years. Treating the ... Read More about Decades in the making: JR’s journey with craniofacial care
Tagged: craniofacial, dentistry, neurosurgery, plastic surgery, psychiatry
A high school hockey goalie in her uniform and gear.

How I hear you: Isabelle’s cochlear implant story

Patient Stories
Isabelle is a thriving AP student, hockey player, and online gamer who listens to music and communicates with the help of cochlear implants. When people ask about the devices behind her ears, she responds, “They’re my ears. That’s how I hear you.” Fourteen years ago, when Vicki and Jason learned one of their newborn twins ... Read More about How I hear you: Isabelle’s cochlear implant story
Tagged: cochlear implants, hearing, otolaryngology

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