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laila, who has After months without answers for Laila, intensive evaluation by a team of Boston Children’s clinicians revealed a rare #genetic condition called #trichohepatoenteric syndrome, poses by a butterfly mural

Saving Laila: Family travels from Egypt for answers about rare genetic condition

Patient Stories
When Aya Hendawy got off the plane that had brought her from Egypt to Boston, she didn’t linger in the airport or consider which tourist attractions to visit. Instead, she took a car directly to the Emergency Department at Boston Children’s Hospital, her daughter Laila in tow. “I asked them to please try to save ... Read More about Saving Laila: Family travels from Egypt for answers about rare genetic condition
Tagged: gastroenterology, genetics and genomics, international, rare disease
Jeanne plays outside wearing a tutu and the brace that is correcting her infantile scoliosis.

A new treatment option for Jeanne’s infantile scoliosis

Patient Stories
If it hadn’t been for the pandemic, Jeanne McDaniel’s treatment for infantile scoliosis would have started when she was 11 months old. Instead, COVID-19 became the first in a series of events that delayed her treatment — and allowed her scoliosis to progress — for months. When her parents sought a second opinion at Boston ... Read More about A new treatment option for Jeanne’s infantile scoliosis
Tagged: orthopedics, scoliosis, spine division
scarlet, who had sdr surgery, smiles at the camer. she is wearing blue glasses

What it’s like to have SDR surgery: Scarlet’s story

Patient Stories
Scarlet is 9 years old. When she was 7, she underwent selective dorsal rhizotomy (SDR), a procedure in which a surgeon cuts certain nerves that may contribute to leg spasticity related to cerebral palsy. We talked with Scarlet and her parents, Darcie and Tyler, about their experience in the Cerebral Palsy and Spasticity Center at ... Read More about What it’s like to have SDR surgery: Scarlet’s story
Tagged: cerebral palsy, orthopedics, physiatry, physical therapy, surgery
gary, who has liver disease, poses in an orange shirt

Trusting their instincts: Gary’s parents find help for immune-mediated hepatitis

Patient Stories
For Mercedes Hollingsworth and Gary Walker, Jr., trusting their parental instincts helped get their son Gary Walker III — affectionately known as GW — the care he needed. “We knew right away that something wasn’t right,” she says. “He just wasn’t a happy newborn. He looked miserable all the time.” Mercedes, who also has an ... Read More about Trusting their instincts: Gary’s parents find help for immune-mediated hepatitis
Tagged: immune disorders, immunology, liver disease
Nora, recovered from Wilms tumor, enjoys winter swimming

After a long journey and a father’s gift, surviving Wilms tumor

Patient Stories
Eleanor (Nora) Franks was a happy, healthy toddler who loved playing with her twin brother Evan. But soon after she turned 3, she began having problems with her digestion. Eventually, her local hospital found a large mass in her kidney and diagnosed her with Wilms tumor, a rare kidney cancer. “She had to go almost ... Read More about After a long journey and a father’s gift, surviving Wilms tumor
Tagged: cancer, kidney failure, nephrology, oncology, transplant
norman, who had a vogm, wears a dinosaur onesie

Treating a ‘unicorn’: Norman’s incredible journey with vein of Galen malformation

Patient Stories
Norman Flores is near the top of his class at his Montessori preschool. He can recognize a Tesla just from the car’s symbol. And he’s picked up an extensive vocabulary from his parents, Sarah and Erick, and older brother, Edward. When Sarah and Erick share these accomplishments, they’re not just being proud parents — they’re ... Read More about Treating a ‘unicorn’: Norman’s incredible journey with vein of Galen malformation
Tagged: vein of galen malformation
karlijn, who had seizures, poses with her mom, dad, and three brothers

Pinpointing Karlijn’s seizures: Neurosurgery helps teen get back to her life

Patient Stories
Karlijn Kuiper was visiting her home country of the Netherlands a few years ago when the trouble began. At first, her family noticed she would zone out. “She had these strange spells where she would just stare,” remembers her mother, Marieke. At first, it didn’t occur to Karlijn’s family that they could be seizures. Like ... Read More about Pinpointing Karlijn’s seizures: Neurosurgery helps teen get back to her life
Tagged: brain tumor, epilepsy, international, neurosurgery, seizures
Joshy, who had a kidney transplant, plays outside with his three brothers

From Virginia to Boston for a kidney transplant: Joshy’s story

Patient Stories
Joshy Buchheit is a lot like most 4-year-old boys. He loves playing in the mud, riding his scooter, and keeping up with his three older brothers, Joseph, Ethan, and Evan. But what sets Joshy apart is that he was born with end-stage renal disease (ESRD) and had a kidney transplant when he was just 20 ... Read More about From Virginia to Boston for a kidney transplant: Joshy’s story
Tagged: kidney failure, MFCC, transplant
Ariyanna, who has sickle cell disease smiles for a photo

Transitioning to adult care for sickle cell disease: Ariyanna’s journey

Patient Stories
Ariyanna Agnew sits in a waiting room at Beth Israel Deaconess Medical Center (BIDMC). The 22-year-old, who has been a patient of the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center Sickle Cell Disease Program for more than a decade, is seeing an adult hematologist for the first time. It’s a milestone event that would ordinarily ... Read More about Transitioning to adult care for sickle cell disease: Ariyanna’s journey
Tagged: blood disorder, sickle cell disease
peyton sits cross legged on a porch after surgery for chiari malformation

What it’s like to have brain surgery: Peyton’s story

Patient Stories
During the summer before my junior year of high school, I started getting a lot of dull headaches at the base of my head and upper neck. I got so used to them that I built up a tolerance to the pain — I didn’t see them as a big deal, or would make excuses for ... Read More about What it’s like to have brain surgery: Peyton’s story
Tagged: chiari malformation, headaches, surgery

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