Jasmine and the puffy tumor: A diagnosis in the nick of time
The Dominique family had just returned from a wonderful trip to Disney World in 2017 when 7-year-old Jasmine came down with a sinus infection. She was in a lot of pain, so her parents took her to their local urgent care center. “They prescribed antibiotics, but even after a week they didn’t seem to be ... Read More about Jasmine and the puffy tumor: A diagnosis in the nick of time
New genetic test yields answer after family’s 10-year search
Kate Cole knew her daughter Lilly was different almost from the moment of birth. She was “a floppy baby,” lacking the strength and muscle tone her older sister had. She had trouble eating and was slow to gain weight. When she started on solid food, she often choked on it. She never really crawled and ... Read More about New genetic test yields answer after family’s 10-year search
Young inventor puts time in hospital to good use
Alexis (Lexi) Abbott is a 14-year-old inventor from the Appalachian Highlands region of Virginia. Lexi is so dedicated to her craft that she didn’t let a recent hospital stay at Boston Children’s Hospital for a complex spinal surgery get in the way of her creativity. Instead, she came prepared, turning her stay into an extended ... Read More about Young inventor puts time in hospital to good use
Solving the mystery of Sophie’s high blood pressure
Sophie Lawrence loves “Baby Shark.” Like many other toddlers, she listens to the popular children’s song on repeat, bopping her head and mimicking the accompanying hand gestures. “Something about it just really calms her when she’s upset,” says her mother, Samantha. Indeed, Sophie was rocking out to “Baby Shark” during a recent appointment with Dr. ... Read More about Solving the mystery of Sophie’s high blood pressure
Taking life with hemophilia one day at a time
Hemophilia has always been part of Kayla Klein’s life. Her father, David, had the condition. Her son, Robbie, has it too. For years, though, Kayla has also surrounded herself with the right people — people who know hemophilia and who have helped her and her husband Joel create a life where the condition isn’t something ... Read More about Taking life with hemophilia one day at a time
Rylan’s story: A fixed and full tummy
Our sweet son Rylan cried all of the time as a baby. We were told by our local pediatrician in Texas that he had acid reflux. For the first year of his life, we sat in a rocking chair and rocked him nonstop while he cried. One night, I fell asleep with him on the couch ... Read More about Rylan’s story: A fixed and full tummy
Incredible Teddy: Thriving with CDH
Andi Lodico left for the hospital at 1 a.m., in labor with her second child. She didn’t return home for two months. Just a few weeks earlier, she and her husband, Phil, had been at a routine ultrasound appointment when they received some troubling news. Their baby, Teddy, appeared to have a rare and potentially ... Read More about Incredible Teddy: Thriving with CDH
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