Author: Emily Williams

Police save lives every day, just not this way — a liver for Sloan

Sloan after her liver transplant pictured next to her living donor, police lieutenant Steve Tenney
Sloane and Lt. Tenney

A police officer’s job is all about action and reaction.

“We see something, react to it and, typically, it’s over quickly,” says Lt. Steve Tenney of the Keene, New Hampshire, Police Department.

But on the morning of Sept. 8, while Steve lay in a hospital bed at Lahey Hospital & Medical Center in Burlington, Massachusetts, action/reaction wasn’t part of the equation. This time, there was time to think. Even so, the decision to donate a piece of his liver to save Sloan — a baby he’d never even met — was made without hesitation.

“I did what anyone would have done,” he says.

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The space between heartache and happiness: Two sons with adrenoleukodystrophy

Paul and Liliana Rojas with their sons, Brandon and Brian, both of whom have adrenoleukodystrophy (ALD).
The Rojas family at a recent visit to Boston Children’s.

When Paul and Liliana Rojas talk about their life, they describe it in one of two ways — the way it was before their sons, 10-year-old Brandon and 7-year-old Brian, were diagnosed with ALD, and the way it is after. Their story is one of heartbreak — but also hope, in the form of a new clinical trial.

Learn more about the results of the clinical trial, recently published in the New England Journal of Medicine, that halted the progression of Brian’s ALD.

ALD is short for adrenoleukodystrophy, a debilitating brain disease that simply goes by its initials.

“Life before ALD was pure happiness without worries,” Paul says. “It was anything a parent could wish for — two boys with no medical issues, active, athletic, the healthiest boys ever.”

The two were inseparable. They played sports together in their hometown of Dover Plains, New York; idolized superheroes; danced like crazy; and dreamed of someday inventing video games. Brian was Brandon’s shadow.

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When transplant isn’t the only option

Ariana, who has pseudo-obstruction and was able to avoid an intestinal transplant, with her mom Nine-year-old Ariana Dufane is happiest when she’s tumbling, whether she’s launching herself off the ground for a cartwheel or practicing how to perform the perfect split. In that moment, the fourth-grader focuses on nothing but strength and balance, a skill she has refined, not just in gymnastics but in life.

Born with intestinal pseudo-obstruction — a disorder of abnormal intestinal motility function that may cause the body to go into intestinal failure — Ariana’s first few months were spent in and out of emergency rooms. Her symptoms began with a distended belly and an inability to have a bowel movement.

“I could tell she was in horrible pain and I didn’t know why,” says Ariana’s mom, Lisandy Jimenez. “She would cry and break out in a sweat.”

Lisandy tried everything — removing milk from Ariana’s diet, a special formula, antibiotics and other medications. When the options ran out, she took Ariana to a gastrointestinal specialist near their home in Stamford, Connecticut. And, when he ran out of options, she traveled to a major medical center in Philadelphia.

“That’s when we got the diagnosis that it was pseudo-obstruction,” Lisandy says.

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Two life-threatening conditions.
One remarkable wish.

Lucas, who received a 5-organ (multivisceral) transplant looks over his mom's shoulderWhen Lucas St. Onge blew out the five candles on his birthday cake, he made just one wish. He didn’t ask for ninja turtles, a T-ball set or an Xbox — the only thing he wished was to be just like any other kid.

“It was a gift I couldn’t give,” says his mom, Heather.

On that same day, last May, he got his wish.

“He got a liver, stomach, pancreas, intestine and spleen — the five organs he needed to help him become healthy and happy,” Heather says.

Heather was 18 weeks pregnant when she and her husband, Anthony, learned they were about to face a myriad of medical challenges with their unborn child. To what extent remained unclear, until the day Lucas was born.

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