Archive for brain health
Homecoming: Jack’s complex care brings a family back to Massachusetts
Georgia and her husband, Keith, moved to North Carolina from Massachusetts in 2015 with a dream of building a house and starting a family. Their plans changed, however, when their son Jack was born in 2017 with severe health complications, including a rare and severe form of childhood epilepsy called Lennox-Gastaut syndrome and a rare ... Read More about Homecoming: Jack’s complex care brings a family back to Massachusetts
Keeping pace: ‘Superhero’ Zachary hasn’t let a brain tumor break his stride
Zachary Sonnek, 11, loves being active, whether that means running or playing baseball, golf, or hockey. “He’s always been ‘go, go, go,’” says his mother, Nicole. So two years ago, when he told his parents he occasionally had trouble breathing, they initially thought he just needed to pace himself. Although he had a clean bill ... Read More about Keeping pace: ‘Superhero’ Zachary hasn’t let a brain tumor break his stride
A model patient: Alexia’s triumph over moyamoya disease
If you’re lucky enough to get time on Alexia’s packed schedule, you’re in the company of a motivated and ambitious young woman who — in the face of a scary diagnosis — shows others they can do anything they put their mind to. From subtle symptoms to diagnosis Alexia’s fight against moyamoya disease, a rare ... Read More about A model patient: Alexia’s triumph over moyamoya disease
Defying the odds: Cruise’s triumph against cavernous malformations and debilitating headaches
As a toddler, Cruise — now 13 — faced a rare cancer diagnosis that came with an 11 percent chance of survival. But with his trademark resilience and strength of spirit, Cruise defied the daunting odds and beat his cancer. The battle left its mark though — in the form of cavernous malformations in his ... Read More about Defying the odds: Cruise’s triumph against cavernous malformations and debilitating headaches
‘Life is so much better now’: Ethan finds treatment for mixed germ cell brain tumor
Ethan Winchenbach was playing with his dogs when he first noticed that something was off. “My vision changed, but only when I looked down,” he remembers. “It was really disorienting.” His mother, Becky, who is a nurse, knew immediately that something wasn’t right. When the symptoms didn’t improve, she made him an appointment with his ... Read More about ‘Life is so much better now’: Ethan finds treatment for mixed germ cell brain tumor
A family’s search for answers and hope for PACS1 syndrome
Alya, 9, was about three weeks old when her mother, Taruna, noticed movements and behaviors she was concerned might be seizures. What followed were multiple hospitals, multiple tests, and eventually a diagnosis of PACS1 syndrome. This rare genetic neurodevelopmental disorder can lead to intellectual disabilities and delays and currently has no cure. “We were told to ... Read More about A family’s search for answers and hope for PACS1 syndrome
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 about Varsity blues: How AVM radiation therapy got Greta back to sports
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
Pieces at work: Luca’s experience with Apert syndrome
Luca Paolacci, 24, is pursuing his bachelor’s degree in mechanical engineering. It’s a serendipitous major given that it studies how pieces come together to create specific force and movement, and Luca’s personal story is a study of the opposite: how creating separation can build strength, movement, and dexterity. “It has always fascinated me how tiny ... Read More about Pieces at work: Luca’s experience with Apert syndrome