Transitioning to adult care for sickle cell disease: Ariyanna’s journey
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
What it’s like to have brain surgery: Peyton’s story
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
Freak accident leads to Dylan’s passion for neurosurgery
It was the summer of 2019. Dylan Keusch had just graduated from prep school and was planning to major in Industrial Labor Relations at Cornell University in the fall. His life felt pretty perfect. “Everything was going great — I was a national club team swimmer at the peak of my career, I was headed ... Read More
Meghan’s journey with UESL: Finding treatment for a rare form of liver cancer
In the spring of 2017, Meghan Tompkins and her parents, Danni and Michael, arrived at the Dana Farber/Boston Children’s Cancer and Blood Disorder Center. They were there for an appointment after Meghan’s doctors identified a suspicious spot on her liver. Meghan, then 13, only knew that she was having gastrointestinal symptoms — no one had uttered ... Read More
Maisie’s story: Our journey with Apert syndrome
Our daughter Maisie is 4 years old. She loves riding her bike, baking, jumping on the trampoline, and keeping up with her older sister, Eliza. She’s also especially skilled at peeling hard boiled eggs. We learned prenatally at 18 weeks that something was going on with Maisie’s development. My doctors suspected craniosynostosis, a condition where the ... Read More
Interventional techniques help Molly thrive with chronic pain
Molly McGowan loves baking, sewing, and taking daily walks in the woods with her goldendoodle, Cooper. But Cooper isn’t just any pet. He’s her service dog and a significant source of support. “I credit him with helping me get up and move every day,” she says. It isn’t always easy. For Molly, pain has been ... Read More
Reaching his goals: Surgery helps CP soccer star shine
Cooper Veloudis loves soccer. At 12, he’s an avid player on CP Soccer’s New York team. This U.S. Soccer member organization provides opportunities for players with cerebral palsy (CP), stroke, or traumatic brain injuries and feeds into the U.S. Paralympics. He’s even kept up with daily practices during the pandemic via Zoom, rarely missing a ... Read More
A repair for Charleston’s complex heart
Trey and Jandie Steele both work in medical device sales. They have spent lots of time in hospital operating rooms and are comfortable discussing complex medical procedures with doctors and surgeons. And yet, when their second child, Charleston, was diagnosed with a number of congenital heart defects one week after her birth, they felt blindsided ... Read More
Avoiding a lifetime of injections: Can gene editing cure severe congenital neutropenia?
Fionn Mulrooney, a cheerful 11-month-old, in Plymouth, Massachusetts, has no idea he has a life-threatening genetic disease. Nor does he seem fazed by the daily subcutaneous injections his parents have learned how to give him. And little does he know that cells from his bone marrow are helping scientists develop an innovative gene-editing approach that ... Read More
‘A 100 percent difference’: Treatment for Graves’ disease helps Emily enjoy college
For Emily Stein, the gift of an Apple Watch led to an unexpected diagnosis. Along with telling the time, delivering texts, and playing music, the gadget tracked her heart rate — and confirmed what the teenager already suspected. “I felt like my heart was always racing,” she remembers. “That was the first sign that something ... Read More