Chloe navigates Marfan syndrome with a positive attitude — and a responsive care team
Chloe Burian has always defied expectations. Despite surgeries and other treatments for several conditions that stem from the genetic disorder Marfan syndrome, the 12-year-old remains upbeat. “Nothing bothers her,” says Chloe’s mom, Audrey. “She goes through life with a smile.” Still, there were moments of doubt along the way, especially when Audrey and her husband, Rudy, ... Read More about Chloe navigates Marfan syndrome with a positive attitude — and a responsive care team
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
Getting a little help from a game show host: How Steve Harvey became Panos’ personal tooth fairy
11-year-old Panos loves to smile and sing — but getting him to show his teeth to a dentist hasn’t always been easy. When he visited a dentist near his home for his first cleaning, the experience was a tough one. “He was overwhelmed by the new environment and refused to open his mouth,” explains his ... Read More about Getting a little help from a game show host: How Steve Harvey became Panos’ personal tooth fairy
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
Pushing the envelope for Eoin: Our family’s experience with esophageal atresia
When I recently brought my son, Eoin, to Boston Children’s for an appointment, we ran into Dr. Farokh Demehri on the bridge from the parking garage. We smiled, laughed, and talked about how nice it was to see each other. It was a simple meeting, but one I had dreamed about for so long: I ... Read More about Pushing the envelope for Eoin: Our family’s experience with esophageal atresia
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
From Florida to Boston and back again: Reagan’s liver transplant journey
Reagan, 18, is gearing up for her freshman year of college this fall, and she has a solid idea about her future career. “I hope to become a transplant nurse or a child life specialist,” she shares with a smile. Her inspiration to enter this field of medicine comes from her experiences with the care ... Read More about From Florida to Boston and back again: Reagan’s liver transplant journey
‘It’s worth it’: Dianna finds support in managing her chronic pain
For Dianna Aguiar, 18, playing tennis, practicing yoga, and going for walks with her dog aren’t just fun ways to stay active. They’re powerful proof of how far she’s come in her journey with chronic pain. Although Dianna has had juvenile arthritis since she was a child, she began experiencing new back and hip pain ... Read More about ‘It’s worth it’: Dianna finds support in managing her chronic pain
From pain to purpose: An update on Dylan’s traumatic brain injury
We first introduced you to Dylan four years ago, when a traumatic brain injury led him to the Department of Neurosurgery for care and instilled in him a love of medicine. We caught up with the college senior this summer to see where life has taken him since he started an internship with the team ... Read More about From pain to purpose: An update on Dylan’s traumatic brain injury
Calm through the storm: Connor’s ulcerative colitis journey
When you meet Connor today, he’s a confident 13-year-old who is incredibly laid back when he speaks about his complex medical condition. This school year, he plans on playing basketball and running track. “I like hanging out with my friends and traveling — now I can do all these things without being in pain.” However, ... Read More about Calm through the storm: Connor’s ulcerative colitis journey