Jake Downey, 10, a third grader at Meeting Street School, is in need of a handicapped accessible vehicle with a lift that will accommodate his wheelchair so his loved ones can continue to transport him to his favorite places and spend quality time with him outside his Warwick home.
His parents, Melissa Kelley and Bob Downey, said while they’ve been using their vehicles, the process is becoming increasingly difficult, as Jake is 60 pounds and growing every day.
Jake, who can’t speak and is non-ambulatory, was born with congenital hydrocephalus, a bleed in the brain that causes cerebral spinal fluid to build and injure brain tissue as a result.
Additionally, the equipment he requires, such as his safety-regulated wheelchair, weighs nearly 60 pounds and isn’t easy for his family, mainly Kelley, to heave into her Ford Explorer. At 5’3” and 125 pounds, she often stresses that she will drop him or injure herself in the process.
“There are times when I’m getting him out and I worry that I’m going to trip over his stroller or slip on ice on the ground,” she said. “If anyone is going down first, it will be me and I’ll try to put my body underneath him so he doesn’t get hurt, but a wheelchair van is a necessity for us.”
According to Kelley and Downey, an appropriate vehicle would provide the protection and freedom Jake requires. Moreover, it will also alleviate anxiety for Jake, as he won’t have to witness his parents struggle as they maneuver him in and out of their vehicles.
In fact, it could be the factor that saves his life.
“There were times when we had emergency situations and he was near death,” said Downey. “I remember on New Year’s Eve one year it was 11 o’clock at night and he was not breathing well and we were trying to get him in the car in a snow storm.”
Jake’s parents realize they can call an ambulance if and when he needs immediate care, however the vehicle is a must because Jake has weekly medical and/or therapeutic appointments since he also suffers from a seizure disorder and respiratory issues.
In an average month, he visits his doctor eight to 10 times.
“In a crazy month, it might be 17, and they are not just one-hour appointments,” Kelley said. “They are two- and three-hour appointments.”
To help make their lives safer, a fundraiser dinner, “Jake’s Wheels,” will be held in Jake’s honor June 27 at 6 p.m. at the West Valley Inn. For a $40 ticket, a guest can enjoy salad, macaroni, chicken, vegetables and ice cream dessert, as well as the chance to bid on multiple items during a silent auction.
Auction items include a foursome of golf at Potowomut Golf Club; a timeshare in North Conway for a week, which was donated by East Greenwich High School where Downey works as a health teacher and baseball coach; artwork; tickets to a Boston Red Sox game; and possibly tickets to a New England Patriots outing.
Kelley said the fundraiser is vital to Jake’s well-being because a brand-new handicap accessible vehicle with a new conversion costs $50,000 to $60,000, while installing a used conversion system and purchasing a used van costs $30,000.
“To make any vehicle handicap accessible is $19,000, never mind the cost of the van,” she said. “If I get a used vehicle and a new conversion, it’s $40,000. We have always included Jake in everything, from family get-togethers to church to going to [his brother’s] ball games, so having the van will help us keep doing that.”
Jake’s brother Logan, 6, who will be a first grader at Cedar Hill Elementary School in the fall, agrees. He said he loves having Jake accompany them to events.
“I like to talk to him,” Logan said. “We play fire trucks, read and draw together.”
To further raise awareness and funds for the cause, Logan and the rest of the students and staff at Cedar Hill held a school spirit day June 7. Through their efforts, they raised more than $2,000.
“We’re going to list it as a Feinstein good deed,” Kelley said.
Logan is also very helpful when it comes to Jake. Downey said he is impressed that Logan always remains patient and makes an effort to assist.
“He knows a lot about Jake and helps out a lot,” said Downey. “When Jake’s not doing right, he’ll go over and talk to him and let us know.”
In addition to Cedar Hill, Downey and Kelley are grateful to members of the community for everything they have done, not only for them, but for all children who have disabilities, including the Trudeau Center, where Jake went for early intervention, as well as Crayons.
“They were amazing,” Kelley said.
Kelley is also appreciative to her OBGYN, Dr. Douglas Nisbet, who delivered Jake. She praised his efforts to make her comfortable after Jake was born, as he checked on her at the hospital when he was off-duty.
“He is just remarkable,” Kelley said. “He’s an incredible person.”
For Downey, Kelley is the one who is amazing, remarkable and incredible.
“Jake’s got a great mom and she goes a great job,” he said. “She gets it done and the van will help the situation.”
For more information, visit jakeswheels.com or email email@example.com.
Donations can be made to Jake’s Wheels and mailed to 940 Quaker Lane, Apt. 1216, East Greenwich, RI 02818. To donate an item for the auction, email firstname.lastname@example.org or call 401-256-3641 or 401-374-2804.