Accessing hemophilia care: A tale of two countries
When Miguel and Marco Antonio were born in the Philippines, they had a 50 percent chance of having hemophilia, as two of their uncles had the condition. “We were just crossing our fingers that they’d fall in the other 50 percent,” says Jojo, their father. But when Miguel was taking his first steps as ... Read More
Pearson syndrome and the story of William’s cells
William will often ask to hear the “story about his cells.” His mom and dad, Elizabeth and Jeff Reynolds, are always honest. Yet, it is difficult for the 4-year-old to understand words like mitochondrial disease or myelodysplastic syndrome. He also can’t comprehend his parents’ pursuit of a novel treatment for Pearson syndrome, which led them ... Read More
Avulsion fracture taps the brakes on a runner’s races
By the time Will Benoit and his parents met Dr. Kristin Whitney, they all had a bad feeling about his left hip. “When she told us Will had a pelvic avulsion fracture, we knew his running season was over,” says his father, Russ. The question was, when would Will run again? From third grade on, ... Read More
A trip to Boston for FMT helps Isaac regain his health
For Isaac Flaming, a course of antibiotics prescribed to treat a simple ear infection led to Clostridium difficile (C. diff), a serious intestinal infection that causes diarrhea, bloody stools, weight loss, and fever. After four months of dealing with an array of debilitating symptoms, the 7-year-old traveled from his home in Oklahoma to Boston Children’s Hospital ... Read More
A mother’s quest to find a cure for Shwachman-Diamond syndrome
Poppy Inez Hawkins is a born entertainer. Her favorite song is “Fire” by Kasabian. She loves kitchen disco. And she can frequently be found staging performances in the Hawkins-family living room at their home in London, England — free tickets provided and clapping encouraged. “She talks to everyone and will tell anyone who wants to ... Read More
‘At complete peace’: Oliver’s transition story
Oliver Sutherland wants to help gender-diverse kids feel more comfortable in and out of the classroom. As a staff member on the Massachusetts GSA Leadership Council, he works with students and schools to help make schools safer and more inclusive for LGBTQ+ students. For Oliver, it’s a role born of both passion and personal experience: ... Read More