‘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 about ‘A picture-perfect life’: Makayla is thriving with OEIS syndrome
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 about Playing the long game: An exciting discovery in telomere disease
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 about Lacrosse, cerebral palsy, and leadership: Luke’s story
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 about No backing down: Sophia takes on a rare form of liver cancer
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 about A ‘super’ new heart surgery for a super kid
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 about On her own terms: Robot-assisted procedure gives Sage more independence
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 about A cerebral palsy journey lands in Boston: Ashlyn’s hip surgery
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 about Changing the world: Baby Denver leads the way after first-of-its-kind procedure for VOGM
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 about One athlete, two hip surgeries, three Ironmans
Inspired by her daughter, one mom helps families navigate complex epilepsy
Colleen Gagnon felt something wasn’t right soon after her daughter Niamh was born but tried to convince herself she was just overthinking. Fighting her instincts as a nurse and second-time mom, Colleen tried to link the dimple in Niamh’s forehead and darting eye movements to her being born six weeks early. But an eye doctor’s ... Read More about Inspired by her daughter, one mom helps families navigate complex epilepsy