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 about Maisie’s story: Our journey with Apert syndrome
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 about Interventional techniques help Molly thrive with chronic pain
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 about Reaching his goals: Surgery helps CP soccer star shine
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 about A repair for Charleston’s complex heart
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 about Avoiding a lifetime of injections: Can gene editing cure severe congenital neutropenia?
‘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 about ‘A 100 percent difference’: Treatment for Graves’ disease helps Emily enjoy college
‘The best decision we ever made’: Bridging the gap for Arya’s esophageal atresia
When Teja and Naveen learned last year that their daughter, Arya, would be born with long-gap esophageal atresia (EA), they did what many parents do: They took to the internet in search of more information. There, they learned that long-gap EA is a rare but serious condition in which a baby’s esophagus develops in two ... Read More about ‘The best decision we ever made’: Bridging the gap for Arya’s esophageal atresia
From ICU patient to nursing student: Atiana’s heart journey
Atiana Lancaster was 13 and playing the last few games of lacrosse season in 2015 when she started having unusual — and worrying — symptoms. “I had horrible headaches, tiredness, chest pain, and trouble breathing, so I had to keep going off the field when I was playing,” she says. “At the time, I thought ... Read More about From ICU patient to nursing student: Atiana’s heart journey
The brightest rainbow follows the darkest storm: Our PVS journey
Caroline is our rainbow baby, born after the loss of another child, the light and color arising after a storm passes. A rainbow baby lifts a family in desperate need of lifting. It is a beautiful thing that I hope you never experience. Caroline was born on Dec. 10, 2015. Just three months later, my ... Read More about The brightest rainbow follows the darkest storm: Our PVS journey
Beating the odds and neuromuscular scoliosis: Colin’s story
Colin Newton has a way of surprising people. Born with a rare neuromuscular disorder, he spent the first three months of his life in the intensive care unit (ICU) struggling to breathe. Two and a half years later, and eight months after he underwent spinal surgery for neuromuscular scoliosis, Colin went skiing for the first ... Read More about Beating the odds and neuromuscular scoliosis: Colin’s story