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Um menino pulando no ar.

Superando as dificuldades da síndrome de Apert: a história do João

Patient Stories
Depois de uma gravidez “perfeita” em 2017, os brasileiros Natália e Igor estavam emocionados por conhecer seu terceiro filho. Eles ficaram chocados quando os médicos arrebataram João uns instantes após o parto. “Até o momento em que ele nasceu, tudo parecia muito normal”, afirma Natália. “Mas quando ele chegou, imediatamente percebemos que havia algo errado: ... Read More about Superando as dificuldades da síndrome de Apert: a história do João
Tagged: apert syndrome, craniofacial, international
A young girl in a hospital bed holding a large paper sign that reads "Emily is going home today."

‘Mom, my brain feels better.’ One mother’s story of her daughter’s fight with epilepsy

Patient Stories
Liliane has a lot to be grateful for this holiday season. Until just this year, her 16-year-old daughter Emily, who has epilepsy, suffered relentless seizures that left her temporarily unable to speak or stand. The seizures began when Emily was 4, and living her life around them was all she knew. But today, Emily is ... Read More about ‘Mom, my brain feels better.’ One mother’s story of her daughter’s fight with epilepsy
Tagged: blood disorder, epilepsy, hematology, neurosurgery, seizures
finn smiles at the camera

After retinoblastoma, Finn ‘keeps on showing us what he can do’

Patient Stories
Six-year-old Finn Carlson “isn’t afraid of anything,” says his mother, Shannon. Whether he’s playing with firetrucks, chasing after his twin, Mack, or riding the tractor on his grandparents’ dairy farm, he’s always up for an adventure. His fearless, free-spirited attitude is even more impressive considering the challenges he’s faced. Born at just 24 weeks, Finn ... Read More about After retinoblastoma, Finn ‘keeps on showing us what he can do’
Tagged: cancer, epilepsy, ocular oncology, retinoblastoma
Georgia cuddling with her pony, unfazed by sJIA

‘On fire’ with sJIA: When arthritis is much more than joint pain

Patient Stories, Research
Georgia is finally living her best life. Her toddler years were challenging: At 15 months old, a series of high fevers landed her at Boston Children’s Hospital for two weeks. After many rounds of tests looking for infection and a bone marrow biopsy to rule out cancer, she was diagnosed with systemic juvenile idiopathic arthritis ... Read More about ‘On fire’ with sJIA: When arthritis is much more than joint pain
Tagged: drug development, immune disorders, interstitial lung disease, research, rheumatology
Baby Myles smiles on an observation table in the hospital, resting on his arms and smiling towards the camera.

Hirschprung’s disease won’t stop Myles from smiling

Patient Stories
Looking at Myles today, you’ll see a picture-perfect 1-year-old full of smiles and giggles. He babbles like any other baby and has a lot of energy that keeps his parents on their toes. You wouldn’t know that the past 12 months have held a series of surprises for his parents — and life-changing treatment for ... Read More about Hirschprung’s disease won’t stop Myles from smiling
Tagged: colorectal and pelvic malformations, hirschsprungs disease
Macy smiles under a tree with her pink mask pulled down her chin.

Getting a diagnosis of ureteropelvic junction obstruction: Macy’s journey

Patient Stories
“It’s ok to be afraid,” says 8-year-old Macy with a strong smile. She would know: She recently experienced a health scare that impacted everything she did, leaving her to feel like she would never get better. While celebrating Hanukkah last year, Macy was playing with her twin sister, Isabel, when she started feeling intense pain ... Read More about Getting a diagnosis of ureteropelvic junction obstruction: Macy’s journey
Tagged: robotics, urology
The silhouettes of a little boy is standing on the shoreline of a beach holding a stick pointing down towards the water.

Finding hope in hard times: Max’s journey with ulcerative colitis and primary sclerosing cholangitis

Patient Stories
When Rachel’s son, Max, had a string of persistent symptoms that caused him to be in and out of their local pediatrician’s office, Rachel knew something deeper was going on. “He would wake up from a deep sleep with intense abdominal pain, fever, and vomiting, he was very sick.” Their pediatrician thought Max just had ... Read More about Finding hope in hard times: Max’s journey with ulcerative colitis and primary sclerosing cholangitis
Tagged: gastroenterology, rare disease, ulcerative colitis
benjamin holds a milkshake. he is smiling an in a hospital bed

From PediaSure to pizza: Benjamin’s journey with esophageal stricture

Patient Stories
This fall, Benjamin Hawkins and his family visited a local orchard to go apple picking. It’s a beloved tradition for many people, but this visit was extra special for Benjamin: For the first time in his life, he could take a big bite out of the apple he’d just plucked from a tree. In fact, ... Read More about From PediaSure to pizza: Benjamin’s journey with esophageal stricture
Tagged: Esophageal and Airway Treatment Center, g tube, gastroenterology, surgery
thomas holds the american flag at the bejing paralympics

Bladder surgery after Ewing sarcoma helps Paralympian get back on the slopes

Patient Stories
Thomas Walsh’s email signature includes the phrase, “No struggle, no progress.” It’s a motto that Thomas, 27, has lived by since he was a teenager. An avid skier who has been competing since he was just 5 years old, he faced a different kind of opponent when he was diagnosed with Ewing sarcoma at age ... Read More about Bladder surgery after Ewing sarcoma helps Paralympian get back on the slopes
Tagged: cancer, ewing sarcoma, surgery, urology
Davidson, who had an AVM, kicks a football

Back from the bench: How my AVM was a new beginning

Patient Stories
It’s crazy how something you once thought was the worst thing that could ever happen to you turns out to be one of the best. My AVM is one of those things. My name is Davidson Jump. I’m from a small town in Ohio where football — high school football especially — is a big ... Read More about Back from the bench: How my AVM was a new beginning
Tagged: arteriovenous malformation, cerebrovascular surgery and interventions center, occupational therapy, seizures

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