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
Anabella’s story: Hope for treating malignant rhabdoid tumors
Watching her deftly maneuver a playground with a huge smile on her face makes it hard to imagine that Anabella Trillo, 3, once faced challenges far greater than a jungle gym. In fact, she has already endured surgery, radiation, chemotherapy, and a stem cell transplant for one of the most aggressive pediatric cancers: a malignant rhabdoid ... Read More about Anabella’s story: Hope for treating malignant rhabdoid tumors
Taking charge: Emma perseveres with laryngeal cleft
Emma Morris is “a pistol,” says her mother, Sarah. “She’s a spitfire, passionate and caring.” But the 11-year-old gets anxious, too — and for an understandable reason. She’s been in and out of the hospital since she was a newborn. In fact, Sarah estimates that her daughter has spent more than 400 nights at Boston ... Read More about Taking charge: Emma perseveres with laryngeal cleft
Jason: My remarkable journey
Most people associate the city of Boston with the Red Sox or the Patriots. I, however, cannot help but associate it with brain surgery. I had my first seizure in the summer of 2006, when I was 14 years old and at camp in Connecticut. Gradually, the seizures increased in intensity and frequency. My parents took me ... Read More about Jason: My remarkable journey