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Preston Hall, the first Boston Children’s Hospital patient with PTEN hamartoma tumor syndrome to be treated with everolimus

Finally in the game: Patient in drug trial for PTEN mutation seems to benefit

Patient Stories
From the time of Preston Hall’s birth at 30 weeks, his parents navigated multiple diagnoses, surgeries and sometimes life-threatening medical issues. At 11 months, Preston underwent skull revision surgery for trigonocephaly (a fusion of the skull bones causing a triangular-shaped forehead). After surgery, his doctors discovered serious airway and gastrointestinal issues that led to his ... Read More about Finally in the game: Patient in drug trial for PTEN mutation seems to benefit
Tagged: clinical trials, neuroscience, pten hamartoma tumor syndrome, rare disease, research
bryson, who has an anorectal malformation, smiles over his mother's shoulder

Bryson’s story: Getting support for an anorectal malformation

Patient Stories, Uncategorized
The wait while a child has surgery can be excruciating for any parent, and Carrie and Brian Mueller are no exception. Even though it wasn’t the first procedure their son, Bryson, had undergone, they were still nervous when the time came for them to hand him over his clinical team. But before a nurse could ... Read More about Bryson’s story: Getting support for an anorectal malformation
Tagged: anorectal malformation
Nate, who had an ACL injury, in the first part of his swing.

Nate’s all-star recovery from an ACL tear

Patient Stories
Just a few decades ago, a child who tore their ACL faced years of reduced activity and inability to participate in sports. Surgical reconstruction was not an option as long as a child was growing. The procedure required drilling through the growth plate, and would disrupt future growth in the child’s affected leg. But in ... Read More about Nate’s all-star recovery from an ACL tear
Tagged: acl, orthopedics, sports injury, sports medicine
Muriel, who had bariatric surgery, during a follow-up visit to Boston Children's Hospital

Muriel’s story: Choosing life after loss

Patient Stories
I was with my mom when she had a heart attack. I was only 3 years old, but I remember her falling down and the EMTs arriving and later being told she had passed away. As I got older, I understood that my mom’s weight and health habits caused her heart disease and ultimately her ... Read More about Muriel’s story: Choosing life after loss
Tagged: metabolism, surgery
Chase, who has brachial plexus birth palsy, in his uniform and helmet during a football game.

Football and family: Overcoming brachial plexus birth palsy

Patient Stories
Chase is only a few months away from fulfilling a lifelong dream; playing college football. It’s a dream thousands of other kids across the country will be living out this fall — but they aren’t like Chase. “The first time I saw Chase was in 2000,” says Dr. Peter Waters, Orthopedic Surgeon-in-Chief and director of the Brachial ... Read More about Football and family: Overcoming brachial plexus birth palsy
Tagged: brachial plexus, hand and upper extremity, orthopedics, sports medicine
Caden, who had a limb difference caused by a lawnmower accident, holds up a big fish.

New hope for Caden’s leg after accident

Patient Stories
By the time he was 12, Caden had spent almost half his life struggling to keep up with his peers. When he was 6, a lawnmower accident badly injured his leg. The injury disrupted his growth plate, and was having a significant effect on his growing limb, leading him to have knock-kneed alignment in his right leg. ... Read More about New hope for Caden’s leg after accident
Tagged: leg lengthening, limb lengthening and reconstruction, lower extremity, orthopedics
Ashley, who was born with symbrachydactyly, performs a gymnastic feat on the horizontal bars.

‘Going for it’ with a congenital hand difference

Patient Stories
“People ask me if it’s harder to do certain things, and I always tell them, ‘I don’t know, this is all I’ve ever had.’” Despite being born with symbrachydactyly — a condition in which the middle three fingers of her left hand never fully developed — 12-year-old Ashley makes most things look easy. She runs ... Read More about ‘Going for it’ with a congenital hand difference
Tagged: hand and upper extremity, orthopedics, performing artist athletes, symbrachydactyly
Daphne smiles while reading a book

Daphne’s story: Lifting the fog on bladder exstrophy

Patient Stories
The day of their 18-week prenatal appointment was the first day of the most difficult 18 months of Pam and Jon’s life. When the ultrasound technician couldn’t see their baby’s bladder, they were sent home to try again later. They had so many questions, plus a 2-year-old daughter, their careers, and a house to take ... Read More about Daphne’s story: Lifting the fog on bladder exstrophy
Tagged: fetal medicine, MFCC, surgery, urology
Teagan, who has Legg-Calve'-Perthes disease, strikes a dance pose.

Teagan’s triumphant return: Dancing after Perthes disease

Patient Stories
Teagan has lived and breathed dance — ballet, jazz, tap, and more — since she was 5 years old. “It’s what makes me happy,” the now 12-year-old says. But two years ago, she started to feel pain in her hip that persisted after dance class and worsened over time. As her spring dance season wrapped ... Read More about Teagan’s triumphant return: Dancing after Perthes disease
Tagged: hip preservation, orthopedics, performing artist athletes
Kristen, who had surgery for her seizures, palms a basketball

Enjoying life, finally free of seizures

Patient Stories
Kristen Grip stood in the middle of the basketball court, motionless. Around her, the action continued as usual — the smack of the ball on the polished wood floor, the rush of her teammates as they darted back and forth, the satisfying swish and shout of victory as someone made a basket. Yet the high ... Read More about Enjoying life, finally free of seizures
Tagged: epilepsy, neurosurgery, seizures

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