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hadley, who had a stroke, with her parents

Still within reach: Virtual visits keep Hadley plugged into stroke care

Patient Stories
When it’s time for Hadley Rizza to see her care team in the Stroke and Cerebrovascular Center at Boston Children’s Hospital, she doesn’t have to leave home. Although Hadley and her parents, Eric and Meredith, live in the Pacific Northwest, appointments with her clinicians are just a click away, thanks to the hospital’s Virtual Visits ... Read More about Still within reach: Virtual visits keep Hadley plugged into stroke care
Tagged: stroke, telehealth
The Harris family at jack Jr.'s graduation. Both Jack Jr. and his father have congenital heart disease.

Appreciating the small things: A New York family’s journey with CHD

Patient Stories
The Harris family of Monroe, New York, are no strangers to congenital heart disease (CHD). Eighteen-year-old Jack Jr. grew up living with CHD, but had always been active. His father, Jack Sr., had also lived an active adulthood, completely unaware of his future CHD diagnosis. When they each found themselves in need of heart surgery, ... Read More about Appreciating the small things: A New York family’s journey with CHD
Tagged: bach, cardiac surgery, congenital heart defect, heart, heart center, heart patient
photo of tiny silver magnets and one red magnet

Avoiding a dangerous attraction to magnets: Lainey’s story

Patient Stories
A few days before Valentine’s Day in 2013, 2-year-old Lainey Styles wasn’t feeling well. She had vomited, was lethargic, and had a fever. After visiting the pediatrician, her mother Jessica thought Lainey had a stomach virus. But the appearance of a softball size bruise around Lainey’s belly button a couple of days later prompted her ... Read More about Avoiding a dangerous attraction to magnets: Lainey’s story
Tagged: advocacy, emergency medicine, research, safety
emma, who has epilepsy, with her service dog

Fighting for answers: Innovative approach to epilepsy helps Emma thrive

Patient Stories
As a nurse, Lynda Coto was used to solving problems — until she was faced with her own daughter’s seemingly inexplicable illness. “I always have answers, and if I don’t, I find them,” she says. “But this time, I just didn’t know.” The questions surrounding Emma’s health began almost as soon as she was born. At ... Read More about Fighting for answers: Innovative approach to epilepsy helps Emma thrive
Tagged: epilepsy, seizures
La familia Cáceres en Boston Children's en 2010

Un renacimiento en Boston: la terapia genética cumple 10 años

Patient Stories
Read the English version. El 17 de diciembre se cumple una década desde que Agustín Cáceres “renació”. Así describen sus padres, Alberto y Marcela, el día en que su hijo recibió su nuevo gen. Nacido en 2010 con inmunodeficiencia combinada grave ligada al cromosoma X (SCID-X1), Agustín pasó los primeros meses de su vida en ... Read More about Un renacimiento en Boston: la terapia genética cumple 10 años
Tagged: gene therapy, scid
scarlett, who had cdh, stands by. a door. she has a white sweater and an ng tube

Making it through the fight: Scarlett’s CDH journey

Patient Stories
Like her name suggests, Scarlett Virginia Moulton “has a lot of fire,” says her mother, Olivia. “She always has a smile on her face. We tell her every day how strong she is and she just smiles. It’s almost like she knows she’s made it through the big fight.” That fight began even before Scarlett was ... Read More about Making it through the fight: Scarlett’s CDH journey
Tagged: congenital diaphragmatic hernia, stroke, surgery
khori, who has congenital enteropathy, is wearing a pink polkadot dress

Going ‘all in’ for Khori: New hope for congenital enteropathy

Patient Stories
Khori LeBlanc is “one of the sassiest and sweetest kids you’ll ever meet,” says her mom, Bryanna Black. Her good mood even carries over to her many hospital visits, where she can be often be found practicing her “karate” moves on the way to an appointment. It’s a resilient attitude that has served her well ... Read More about Going ‘all in’ for Khori: New hope for congenital enteropathy
Tagged: gastroenterology, genetics and genomics, organoids, precision medicine
Jim, who has PK deficiency, stands holding a volleyball

PK deficiency clinical trial: Jim’s volleyball ace

Patient Stories
Growing up with pyruvate kinase deficiency (PK deficiency) wasn’t always the easiest thing, but it was my reality. My visits to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center helped give me perspective — although my condition was difficult to deal with, it certainly was not the worst condition I could have. It made me grateful ... Read More about PK deficiency clinical trial: Jim’s volleyball ace
Tagged: blood, pyruvate kinase deficiency
Finn, who was born with clubfoot, runs down a leafy path.

Clubfoot bracing for an active boy: Finn’s story

Patient Stories
When Finn Beaulieu learned how to say elephant, he ran around the house repeating the word at least 20 times. When asked to rate his activity level, his mother Carolyn says, “He’s 2½, I would say his activity level is high.” Finn’s joy of movement can make it challenging for his parents to put him ... Read More about Clubfoot bracing for an active boy: Finn’s story
Tagged: clubfoot, lower extremity, orthopedics
Carly, who had Wilms tumor, and her mom share a hug

Dancer stays on toes during kidney cancer treatment

Patient Stories
Carly Tobin loves dancing for the fun and freedom it provides. During treatment for a rare pediatric kidney cancer known as Wilms tumor, the pre-teen’s passion also proved a vital source of strength. Diagnosed in early June 2019, Carly — now 11 and cancer-free — underwent surgery, radiation, and chemotherapy at Dana-Farber/Boston Children’s Cancer and Blood ... Read More about Dancer stays on toes during kidney cancer treatment
Tagged: cancer, wilms tumor

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