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