Coming to Boston Children’s during COVID-19: Keith’s story
At just 4 years old, Keith Bennett has spent more time in the hospital than most kids ever will. Diagnosed with a chronic kidney disease called nephrotic syndrome, he visits Boston Children’s Hospital several times a week — and has continued to do so throughout the COVID-19 pandemic. Now, as Boston Children’s begins to move ... Read More about Coming to Boston Children’s during COVID-19: Keith’s story
Cancer won’t stop me, and neither will COVID-19
Most people my age look at COVID-19 as a burden on their everyday lives of seeing friends, hanging out, and going to college. I see it differently. As an active cancer patient being treated for T-cell acute lymphoblastic leukemia (ALL), I am immunocompromised. This puts me at especially high risk for contracting COVID-19, and my ... Read More about Cancer won’t stop me, and neither will COVID-19
For Kenny’s family, it’s a beautiful day
As recent immigrants to Boston from Honduras, Jessy and Edgar didn’t have an easy life, but they were happy. They were both working full-time, raising their teen son, and finding their place in the U.S. They were moving forward. Four years after their arrival, the family was elated to be expecting another son. When Kendall ... Read More about For Kenny’s family, it’s a beautiful day
Sharing our journey with cavernous malformations
Finley and her twin sister, Rowan, were born seven weeks premature on November 7, 2017 in Scranton, Pennsylvania. In July 2019, Finley was diagnosed with a cavernous malformation, an abnormal mass of thin-walled blood vessels, in a part of her brain called the cerebellum. My wife, Jolene, and I were shocked. Although I was diagnosed ... Read More about Sharing our journey with cavernous malformations
I never thought this would happen to our son
On June 16, 2019, our 4-year-old son, Evan, fell off a jungle gym at daycare. At first, his daycare provider thought he was fine. He got right up and seemed to recover. She called me and we agreed to watch him to see if there were any changes. A couple hours later, Evan started throwing ... Read More about I never thought this would happen to our son
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 about Accessing hemophilia care: A tale of two countries
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 about Pearson syndrome and the story of William’s cells
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 about Avulsion fracture taps the brakes on a runner’s races
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 about A trip to Boston for FMT helps Isaac regain his health
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 about A mother’s quest to find a cure for Shwachman-Diamond syndrome