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. …
When your child plays a sport, it’s often hard to tell where everyday aches and pains end and a potentially serious injury begins. Bumps and bruises are anything but rare in contact sports, and muscle soreness can be a common complaint for any young athlete — especially given the rigor of youth athletics these days. So how do you know when your child’s hip pain is due to an actual injury?
In fall of 2014, I was a senior, excited about finishing high school in New Hampshire and heading off to college. But I could never have guessed what the year would bring. I was an avid lacrosse player and competing in my fifth game of a tournament when I started to notice I was having trouble seeing out of my left eye. Soon, my hand felt weird and I couldn’t grip the stick properly. As I sat on the sidelines, onlookers recommended I be taken to a local hospital. …
It was early morning and Tiffany and Joe Palowski were worried. Their son, Michael, was undergoing a magnetic resonance imaging (MRI) scan to determine the cause of his excruciating headache. The test — only expected to take about 45 minutes — now approached the two-hour mark. “They had to have found something,” Tiffany said as her panic rose. “I know they did.”
About 10 days earlier, Michael had gotten sick, vomiting so intensely that he began throwing up blood. The 6-year-old had spent a week in a local hospital with a suspected case of norovirus before being sent home. But then he’d developed a headache that wouldn’t clear up. Thinking he might have a migraine, the family returned to the same hospital in Connecticut. But now they wondered if more than a migraine was in play.