MAKAKILO, OAHU (HawaiiNewsNow) - A little boy named Jacob was the center of attention at an Armed Forces Day Festival, where the proceeds went toward helping him get a new van.
Jacob Butierries is just seven years old. When he was a nine-month-old baby, the Makakilo boy was diagnosed with Spinal Muscular Atrophy, a degenerative disease that has kept him from walking or standing.
"There's no cure," said his mother, Lori Butierries, recalling what doctors told her. "There's nothing to prevent or halt the progression of this disease. So just take your kid home and love on him."
Lori and her husband, Dennis, have certainly showered love on the boy as he continued to grow, well past the few months he was given when he was diagnosed. He's now big enough that transporting him is a challenge.
"He's over 60 pounds, and so its an effort for my wife when I'm not around just to get him into the van, and she's had a couple of incidents on H-1 (freeway) where she had to get over to the shoulder to help him," said Dennis Butierries.
The family doesn't have the $60,000 or so needed to buy a converted van that will allow them to wheel Jacob on and off. And insurance won't cover it.
"We have great insurance in the military, but only covers so much," said Lori Butierries. "We have a cap, and we've pretty much exceeded our cap for this year."
That's where the Pearl Harbor-Honolulu branch of the Fleet Reserve Association came in. The veterans' group put the Armed Forces Day Festival together. All the proceeds from Saturday's fundraiser will go toward getting the van for Jacob, whose dad is a marine veteran and is currently with the Coast Guard.
"After hearing his need, we decided that this is something we should do," said association past president JJ Wynn, a retired marine. "I mean, if we're veterans, and you can't help your own fellow veterans, you need to get out of the business."
Jacob's family has already raised much of the money from friends, family, and a GoFundMe drive. They're hopeful that the festival will help them reach their goal. But they're also grateful for the help.
"This is just being given to us, and it's hard to accept that," said Lori Butierries." Just that something is going to be given to you, and such a meaningful gift."
Related link: Fleet Reserve Association "Jacob's Quest" page