Two brothers will not be traveling any distance any time soon because their family’s customized van was stolen early Tuesday morning in Franklin Square, their father said.
The blue, 20-foot-long, 2007 Ford van, which includes a bed, has enough space for his sons’ two wheelchairs and for their two other brothers to sit comfortably, their father, Rob Gasperetti, a retired NYPD detective, said. There was also a backup wheelchair in the van when it was stolen.
Brian Gasperetti, 20, and his brother Dylan, 13, enjoy jokes — though they tend to start laughing halfway through — but cannot sit up, walk or speak. And only one of them can eat a little solid food if assisted, Gasperetti said.
The two brothers have Pelizaeus-Merzbacher disease, which affects about 1 in 500,000 people in the United States. The genetic condition causes myelin, a vital nerve-protecting sheath in the brain and spinal cord that helps transmit pulses, to degenerate.
The family’s two other sons, Andrew, 15, and Trevor, 18, are unaffected by Pelizaeus-Merzbacher. So is their mother, Kristen, a stay-at-home mom, though she carries the gene for the disease.
Gasperetti was awakened at about 5:30 a.m. Tuesday by “an ignition going off,” but figured it was just a neighbor going to work until he noticed the van was missing about 15 minutes later.
Nassau police confirmed the van was reported stolen, and said an investigation is underway.
Whoever took it could not have failed to hear the backup wheelchair, which was not secured, bumping around in the back, Gasperetti said.
Because Brian and Dylan have used wheelchairs almost all their lives, their father has grown adept at cannibalizing their old chairs for parts and thus was able to create a “mishmash” of a temporary substitute out of three devices they had stored in their garage.
However, it lacks features of the $1,800 stolen backup wheelchair that insurance will not cover.
The family hopes the thieves have a change of heart.
“Extended ones [vans] are hard to come by, and replacing it would probably take months,” Gasperetti said.
The Gasperettis had to wait eight or nine months for the van to arrive after ordering it, along with its special side lift.
The stolen van also had all of Brian’s and Dylan’s favorite DVDs.
“Brian is into Sponge Bob,” Gasperetti said. Dylan prefers hockey. “The younger one likes to see action on TV.”
“Cognitively, if you ask them a question, they won’t be able to answer you, but you can pretty much tell what they want,” said Gasperetti.
And Brian and Dylan can hit Yes or No buttons on their wheelchairs to answer questions.
“They’ve done more for my development than I have for theirs,” Gasperetti said.
For now, the long trips the family has enjoyed — from camping to the annual Midwest meeting of the Pelizaeus-Merzbacher foundation — are out until their van is returned or a replacement arrives.
Gasperetti, however, was keeping his perspective.
“We could have been driving through Ohio” and overturned, he said. “I’d rather lose it this way.”
Both Brian and Dylan already have beaten the odds; most children with Pelizaeus-Merzbacher don’t make it past 8 to 12 years old, he said.
“We celebrated when Dylan turned 13 — we got two that far.”
CORRECTION: An earlier version of this story misstated the number of people in the United States who have Pelizaeus-Merzbacher disease. The disease affects about 1 in 500,000 people in the United States.