Josh finds recipe for success from endocrine-oncology team
As a chef in training who dreams of opening his own restaurant, Josh Gartland, 15, knows the importance of a good recipe. When it comes to the genetic disorder known as von Hippel-Lindau syndrome, Josh also knows the value of a good treatment plan, and experts in the Endocrine-Oncology Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center ... Read More about Josh finds recipe for success from endocrine-oncology team
Living a full, active life with long QT syndrome
My older sister, Tanya, began having periodic fainting episodes when we were teenagers. The doctors were stumped, but my dad was determined to find out what was causing them. He knew it might mean the difference between life or death. Years earlier, my mom had similar fainting spells, which her doctors had said were seizures. ... Read More about Living a full, active life with long QT syndrome
Our SCID gene therapy journey
In just 18 months, our son Paul Gallagher has been through more than what most people go through in a lifetime. He was born on Nov. 10, 2017, with a tenacious spirit, yet without an immune system — meaning that the simplest infection was difficult to fight and a common cold was life threatening. His ... Read More about Our SCID gene therapy journey
Care for stroke lets Matty just be a kid
Most adults might encourage kids to behave themselves, but Matthew Marino’s doctor wants to help him make mischief. “He told us that he loves when kids cause trouble and that he wants to help Matt cause trouble, too,” says his mother, Maura, of Dr. David Fogelman, a physiatrist in the Stroke and Cerebrovascular Center at ... Read More about Care for stroke lets Matty just be a kid
Leading the way: Ava’s experience with teduglutide
Ava Orsini visits Boston Children’s Hospital every two weeks. It’s more time than any kid wants to spend at a hospital, particularly when she lives a state away. But for this 9-year-old and her parents, the trips are worth it: For the past two years, she’s been participating in a clinical trial of a drug ... Read More about Leading the way: Ava’s experience with teduglutide
When even experts can’t figure you out: CNS-restricted HLH
At first it seemed like motion sickness when 5-year-old Emily threw up after spinning around outside, or during car rides. No one thought much of it. But gradually, she also developed headaches and stomachaches. Her walking and balance started to falter. She became lethargic, and complained about something in her eye. Her face took on ... Read More about When even experts can’t figure you out: CNS-restricted HLH
Jillian’s story: Finding care, support, then a diagnosis
Eighteen-year-old Jillian Allair is funny, independent, sarcastic, and the charmer of the family. She loves music, especially top 40, and little kids, with a soft spot for those with medical challenges. Jillian knows a thing or two about medical challenges herself — she’s been a patient at Boston Children’s Hospital since she was 8 weeks ... Read More about Jillian’s story: Finding care, support, then a diagnosis
Matt and Brendan: Post-op pals, for life
Eighteen-year-old Matt Freitas and 16-year-old Brendan Cogavin met as roommates at Boston Children’s Hospital, but that’s just a small part of why they’ve stayed in touch for the six years since. “Their relationship goes beyond knowing each other at their worst,” says Melissa, Matt’s mom. “Brendan is cool, smart, and tries hard at everything he ... Read More about Matt and Brendan: Post-op pals, for life
After four unsuccessful heart surgeries, Nicholas finds hope
When Brenna and Lorenzo Degano arrived in Boston with their son, Nicholas, last April, it was with a feeling of restrained hope. After four unsuccessful heart surgeries in California, they were hesitant to put their son through a fifth surgery not knowing if the outcome would be any different. Nicholas was diagnosed at age 7 ... Read More about After four unsuccessful heart surgeries, Nicholas finds hope
Alivia’s journey with CDH
Alivia Gannon recently got the kind of information every kid wants to hear: She won’t have to return to the Congenital Diaphragmatic Hernia Program at Boston Children’s Hospital for another five years. For Alivia and her parents, Erin and Richard, the news is particularly welcome: Although the active 12-year-old is now the picture of health, ... Read More about Alivia’s journey with CDH