LUMBERTON — Luke Hendren and his twin brother Logan had their first public outing Saturday.
Most trips for the 14-month-old boys, whose life expectancy has been whittled down to two years of age by a rare genetic disorder, have been to the emergency room — but Saturday’s benefit bike run, held to help raise money for their medical costs, was a welcome exception.
Held by their aunt, Kacey Taylor, and grandmother, M.J. Newton, under a tree on the campus of Robeson Community College, the boys sat shaded from the sunlight glinting off the chrome of more than 200 motorcycles, each carrying a rider who had come to support them.
“We’re so grateful and really fortunate to have so many people that care about these boys, some that don’t even know them,” Meagan Hendren, mother to Luke and Logan, said. “My boys are everything to me.”
Outings for the Hendren family always require hauling two oxygen tanks and suction machines, and are usually reserved for trips to Chapel Hill, where the twins receive enzyme treatments to battle the effects of Gaucher’s Disease — a rare genetic disorder that affects the liver, spleen, kidneys, lungs and brain, and inhibits the twin’s ability to breathe, eat, sit and stand.
“This is the worst thing in the world to me, worse than cancer,” Meagan said. “With cancer, you can at least hope for remission, or that they’ll find a cure. I know there is no cure for this.”
The twice-monthly treatments, designed to help the twins manage the disorder, cost $10,000 each.
“We’re just trying to help offset the family’s medical expenses,” said Garrett Robinson, a firefighter who works with Luke and Logan’s father, Jarrod Hendren, at the Lumberton Fire Department.
Robinson, along with fellow firefighters Jens Lutz and Willie Stewart, Jr., came up with the idea for the benefit bike ride 45 days ago — and it was a good one. Familiar to the cause or not, the bikers all had the same answer for being at the bike run — to help the two children whose faces were on the flier.
“These days and times, you need all the help you can get, especially when you have medical expenses,” said rider and family friend Terry Kinlaw, of Lumberton. “It’s a good cause and a good day to ride — it’s money well spent.”
A $15 ticket bought riders a dinner of hamburgers and hot dogs and the chance to win a raffle and door prizes at the destination of Fairmont’s Fire Hall on Main Street. About 350 of them had been sold, raising more than $5,000. There was also an auction later in the day on Saturday.
“This is a family that needs our support, and we’re out here to give it,” said Brian Prevatte, who made the trek to RCC from Dublin.
For Jarrod and Meagan Hendren, it’s the memories that mean the most.
“Some days it’s as if we’re watching the boys slowly fade away,” Meagan Hendren said. “We don’t know what to expect, but we’re fighters, and I guess they are too.
“You live day by day, making memories, that’s all you can do,” she said.