Varsity blues: How AVM radiation therapy got Greta back to sports
Want to find Greta? Try the hockey rink, or softball field, or volleyball court. Where won’t you find her? Sitting on the sidelines — at least not anymore. After a tough year receiving treatment at Boston Children’s Hospital for a tangled cluster of blood vessels in her brain, known as an arteriovenous malformation (AVM), Greta’s ... Read More
‘A picture-perfect life’: Makayla is thriving with OEIS syndrome
On a sunny day this spring, Makayla Brisson was on a mission: to find the two bunny rabbit sculptures in the rooftop garden of Boston Children’s Hale Family Building. As much fun as she was having, Makayla was distracted: She was anxiously waiting for her best friend, Aubree. And as Aubree and her parents entered ... Read More
Playing the long game: An exciting discovery in telomere disease
Each time our cells divide, the protective caps that keep our chromosomes from fraying, called telomeres, lose a bit of their DNA. Telomeres shorten steadily as we age, but in certain medical conditions like dyskeratosis congenita, the process is accelerated. “Your telomeres determine your lifeline; how long they are determines how old your body is,” ... Read More
Lacrosse, cerebral palsy, and leadership: Luke’s story
When he returned to lacrosse after surgery on his left leg, Luke Kilfoyle wasn’t nervous. In the five and a half months since his surgery, he’d worn a cast, gone to school in a wheelchair, used a walker, then a cane and ankle-foot orthosis (AFO). He’d spent hours in physical therapy and the gym. By ... Read More
No backing down: Sophia takes on a rare form of liver cancer
Sophia LaBorde is headstrong and “doesn’t back down,” says her mother, Alicia. So last year when Sophia had some gastrointestinal discomfort and a low appetite, she asked her parents to bring her to her local pediatrician. And when test after test ruled out more common culprits — lactose intolerance, heartburn, even thyroid disease — she ... Read More
A ‘super’ new heart surgery for a super kid
When you’re the first person in the world to undergo a new type of heart surgery, you don’t have to use the procedure’s clinical name. You can give it any name you want, even your own. That’s what 7-year-old Easton Schlein’s family has done. While his Boston Children’s cardiac surgery team calls the groundbreaking procedure a “reverse ... Read More
On her own terms: Robot-assisted procedure gives Sage more independence
At 19, Sage Nault has had multiple surgeries, aimed at addressing challenges related to myelomeningocele, the most severe form of spina bifida. But it’s her most recent operation that might have the greatest impact on her quality of life. Known as a Mitrofanoff appendicovesicostomy and a Malone antegrade continence enema (MACE), the combined procedure has ... Read More
A cerebral palsy journey lands in Boston: Ashlyn’s hip surgery
Eleven-year-old Ashlyn’s parents describe her as spicy, strong willed, and determined. Those qualities have served her well through a medical journey that started soon after she was born with cerebral palsy (CP). Ashlyn has had multiple operations to manage the symptoms of CP, but when it came to the question of hip surgery, her parents ... Read More
Changing the world: Baby Denver leads the way after first-of-its-kind procedure for VOGM
Denver Coleman is less than 2 months old, but she’s already helped blaze a trail for other children and families, a feat she accomplished before she was even born. Denver, who was diagnosed with a vein of Galen malformation — a type of rare blood vessel abnormality inside the brain — in utero, is the ... Read More
One athlete, two hip surgeries, three Ironmans
Trevor Spence grew up playing just about every sport he could. When he was 3, he laced up his first pair of hockey skates. When he was 10, he medaled in the Junior Olympics 1500-meter Track and Field event. Throughout middle and high school, he travelled to tournaments for hockey, lacrosse, and soccer. “I did ... Read More