CENTRAL FALLS, RI — Most 4-year-old boys love fire trucks, but most 4-year-old boys don’t get to make the fire department their playground.
With a Central Falls firefighter for a dad, AJ Brown has grown up at the fire station on Illinois Street. The firefighters there admit they’re all family.
“We work 24 hours here. We do everything together,” Union President Lt. John Garvey said. “Not only the fire aspect of it and EMS aspect of it, but we live together, we cook meals together, we train together, all of that. It’s a home away from home.”
So they all felt the gut punch when AJ’s parents, Josh and Danielle Brown, got a diagnosis that was three years in the making.
“I remember calling the pediatrician, telling him what was going on and he said, ‘You’ve got to get him to Hasbro and get him evaluated because we think he’s having a seizure,'” Josh recalled.
AJ was two months old when he had that first seizure. When the seizures kept happening, evolving into grand mal seizures by age 3, Danielle insisted on another MRI.
“That’s when we saw the abnormality,” Josh said.
AJ was diagnosed with Labrune syndrome, a rare genetic disorder that affects the brain’s white matter. He’s one of only 100 people in the world ever diagnosed with it. There’s no cure, and the disorder is degenerative.
“It’s tough,” Garvey said, speaking on how difficult it is to watch the family go through this. “As a parent of two boys myself, it’s tough to see Josh and Danielle’s son burning with something.”
That’s why the department is doing everything they can to support the family through fundraisers, and even taking on extra shifts when Josh has to take AJ to a specialist in Washington, D.C.
One fundraiser for the family is already sold out.
“I don’t even know how to describe it, the brotherhood of the firehouse and those guys being there for us,” Josh said. “I feel really blessed to have the guys behind us and supporting us throughout this journey.”
Doctors have told the family it’s likely that over time AJ will begin to lose coordination, motor functions, and the ability to eat on his own, but there’s no telling when that could happen or how severe it will be.
“I want to live now, in this moment with my son,” Josh added. “I don’t want to think about the other stuff, so we do our best to make sure that he gets as normal of a life as we can provide for him.”
So instead of counting the days, they’re making the days count, admitting that AJ’s bright personality and empathetic nature help them through the hardest moments.
“He’ll come over, he’ll rub your shoulder, give you a hug and a kiss,” Josh said. “He is a sweet little boy.”
With a family of firefighters by their side, they’re determined to hold on to hope and find a treatment for their little fighter who’s small, but strong.
If you’d like the help the Brown family with the cost of treatment and travel to AJ’s specialist, you can donate to their GoFundMe page.
Learn more about Labrune syndrome research and the LCC Foundation here.