Stories about: Our Patients’ Stories

The show must go on: Teen overcomes motility disorder

teen recovers from motility disorder

In October 2016, we were spending a weekend in Minnesota for a family wedding. Little did we know we would be there longer than expected!

During the rehearsal dinner, my 16-year-old daughter Sophie said she wasn’t hungry — a surprise because it had been a long day of travel and the rest of us were starving. She managed to force down some food but seemed lethargic and not herself. She later confessed that she had been feeling sick all day.

Back at the hotel, I had just drifted off to sleep when my other daughter called me from their room. She said Sophie was sick and crying. I ran down the hall and when I saw her, I just knew something was wrong. My instincts said get to the ER right away.

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Narcolepsy is my sleepy superpower

My talent is almost more like a superpower. I have the ability to fall asleep wherever and whenever. Now I know you’re probably thinking all teenagers have this power, but trust me, I’m a little different. At any time or place, I have the ability to take a nap.

Intrigued by my power, experts and doctors conducted multiple tests and studies on me. When the results came back, it was clear I wasn’t normal. One doctor even admitted, “These are numbers I’ve never seen before.”

Developing my superpower

I first began developing my sleepy superpower in the fall of my junior year after transferring to Middlesex School. That autumn, I was eager to get to know my new teachers and peers and have them get to know me — and my year started strong both academically and socially. However, in November, my excitement quickly vanished as I began to involuntarily fall asleep in multiple classes.

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Fighting for Kennedy: Coping with moyamoya disease

Girl with moyamoya disease is thriving.

If you happen to be waiting in line at the supermarket with Kennedy Grace Cheshire, you’ll likely leave the store with a whole new group of friends. This outgoing five-year-old can’t resist introducing herself to her fellow shoppers — and then introducing them to each other. “She’s never met a stranger,” says her mother, Amber.

Kennedy, who lives in Texas, brought that playful attitude to the East Coast last year when she and her family arrived at Boston Children’s Hospital for evaluation and treatment.

At age two, she had been diagnosed with neurofibromatosis 1 (NF1), a genetic condition that causes symptoms including benign tumors that form from nerve tissue. The diagnosis wasn’t surprising: Kennedy’s father Robert has NF1, too. But a couple of years later, an MRI scan brought a shock.

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Paying it 26.2 miles forward

Tom Williams, a liver transplant recipient, crosses the Boston Marathon finish lineThere is a spot on the Boston Marathon route called “The Liver Mile.” It’s where the grind begins, where the storied course starts to tests runners and where legs often weary from pounding 16.8 miles of punishing roads.

Yet, it’s also where 21-year-old Tom Williams, a liver transplant recipient from Dracut, Massachusetts, first fell in love with the idea of running the Boston Marathon.

“I wasn’t thinking about the difficulty of it,” he says. “I was just thinking, I want to run for other people who are sick.”

Located in front of Newton-Wellesley Hospital, “The Liver Mile” is where volunteers hand out water and gather in support of the Run for Research team, which raises money to benefit the American Liver Foundation. For years, while someone else ran for him as part of the patient-partner program, Tom was a spectator on the sidelines.

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