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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.
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. …
A parent’s guide to clinical trials
Children with life-threatening conditions, such as cancer, are often candidates for clinical trials. What are they? Which factors should parents weigh in determining whether enrolling in one is a good option for their child? Dr. Steven DuBois, director of the Advancing Childhood Cancer Therapies Clinic at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, answers questions about clinical trials. …
Pulmonary vein stenosis: A clinical trial in Jack’s juice glass
At just 6 months old, Jack Marquis was suddenly given four weeks to live. After he was born with complex congenital heart defects, Jack’s doctors in California had performed two open-heart surgeries that they thought would save Jack’s life.
But just when they thought he was out of the woods, Jack’s condition suddenly began to deteriorate rapidly.
“On top of everything else, we learned he had a rare condition called pulmonary vein stenosis,” says Jack’s father, Andrew. …