‘Van Doesn’t Run’? They’ll fix that for Julie
Life for Julie Jones sure would be easier if she had a wheelchair-accessible van.
Julie, 41, of Fountain Valley, has spinal muscular atrophy, a genetic disorder causing muscle damage and weakness in muscles used for activities such as walking, sitting up and controlling head movement. She has used a wheelchair since age 3.
“I have never walked,” Julie said in the one-story home she shares with her parents, Connie and Garry Jones.
Julie, who lacks muscle tone and control, cannot be safely lifted out of her chair and into a regular car. Her parents are in their 70s and just can’t manage it.
The family had relied on their 25-year-old wheelchair-accessible Ford Club Wagon to get her to doctor appointments and procedures. But over a month ago, that trusty red-interior van, which Julie nicknamed “Ol’ Smokey,” seemed to express its last cough.
That’s when her friends rallied.
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A van’s last stand
A few years ago, Ol’ Smokey began to show signs of aging. The power windows stopped rolling down and the air conditioner broke.
Five or six years ago, Julie’s father was driving on the freeway and realized the van had overheated. He pulled over to the side of the road and dumped water on the engine so the family could make it home. It wasn’t the only time this happened.
Then around noon on Oct. 3, Julie and her mom were returning home after receiving flu shots at a routine doctor’s appointment. They were seven or eight miles away from pulling into their driveway when Ol’ Smokey started literally smoking.
Bam!
The car felt like it was dragging.
Connie was able to safely pull over, managing a left turn into a neighborhood off Newhope Street. Within seconds, Smokey died in the first available parking spot in front of a house. A cloud of smoke billowed from the engine. Connie jumped out of the driver’s seat and quickly helped her daughter roll out of the back of the van.
The homeowners were hosting a garage sale that day and offered the mother and daughter cold water.
Connie called for roadside assistance and arranged for a flatbed truck to take the van to their home. She stressed to the dispatcher the importance of finding accessible transportation to get Julie home.
The challenge was Julie’s wheelchair. The power chair that she controls electronically with her dominant hand weighs about 450 pounds. Because Julie is ventilator-dependent, the mobile chair is equipped with a machine designed to move breathable air in and out of her lungs, along with a suction machine, a Passy-Muir Valve to help her speak and extra batteries for the ventilator.
Everywhere Connie called, from taxi services to Paratransit, she was told that it would take two to three hours to find a medical transport for non-emergencies.
The 95-degree weather that day worried the two. Julie was drenched in sweat and her heart rate was climbing. Connie thought of the extra battery she would have to change in Julie’s ventilator. A battery dies after six hours. The Joneses were within seconds of taking off on a long walk home.
Then the auto-service dispatcher called. A medical transport would pick up mother and daughter in 20 minutes.
“They were really great because they had to call around to find a wheelchair van, and this was not an average call for them,” Julie said. “If we had to roll home, we would’ve had to change that battery.”
After being stranded for three hours, Julie and Connie arrived home, cooled down and took the rest of the day to think about what to do with the van. No one was sure what was wrong until Garry popped open the hood.
Garry, who has been described as able to repair anything, said it was the transmission. This time, he couldn’t fix the problem. Connie called three mechanics and learned that a replacement would cost $3,000 to $4,000. The repair would be too expensive.
The van has sat untouched in the Jones’ driveway for weeks.
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Starting on the right foot
In 1987, the average cost of a new house was $92,000, Michael Jackson’s seventh album, “Bad,” was released, and Julie Jones was a freshman at Fountain Valley High. As she rolled across campus, she met a person who would become her friend for the next 27 years.
Julie’s first contact with then-sophomore Chad Duncan was an accident.
She ran over Duncan’s foot as she shifted from fifth to sixth gear in her wheelchair outside the school’s theater.
“I said, ‘Hey! Watch where you’re going,’” Duncan said by phone from Ft. Worth, Texas. “And she said to me, ‘You saw me coming.’”
“I was going, ‘Who is this girl?’”
After Julie graduated in 1991, she mostly stayed in touch with the Fountain Valley High alumni, particularly her old theater and choir classmates. Communication really picked up again when email was introduced in the ‘90s.
After the van broke down, Julie filled Duncan in on what happened. She remembered telling him she didn’t know what she was going to do. Duncan, who is a social worker, had an answer.
Why not host a fundraiser?
But Julie was not convinced. She had seen friends hold fundraisers and take away little to nothing for their causes.
“I told her that those failed because they didn’t have your friends,” Duncan said.
Duncan wrote an email to friends asking for their particular talent to help the campaign to replace Ol’ Smokey. He set up an account on the international crowdfunding site Indiegogo titled “Wheels for Julie: Van Doesn’t Run.”
Chris Barela wanted to bring his creative resources. Barela, who also was in the Fountain Valley High theater program, is a graphic designer in Rancho Santa Margarita. He designed fliers and got in touch with Steve Smith, owner of Fountain Valley Taco Bells, to arrange for fundraising events at the fast-food restaurant locations off Talbert near Costco and near Fountain Valley High.
Friends and family gathered Nov. 8 to spread the word and raise money; 20% of the sales from both stores were donated to the cause.
“It was wonderful,” Barela said. “For me personally, I enjoy that Julie can see this is what she means to us.”
Amid the seriousness came some levity.
Duncan said a friend he hasn’t seen for almost 30 years sent him a reply to the forwarded email. The message contained an attachment. He clicked it open to hear former classmate Michael Brothen singing a parody of Paul McCartney’s “Band on the Run.”
Brothen, who now lives in Lansdale, Pa., changed the words to “Van Doesn’t Run,” sang a cappella in his car and posted the recording on YouTube.
Her van doesn’t run, van doesn’t run
She needs her van, can you lend a hand
and help us raise some funds?
For her van doesn’t run
Well the van imploded with a mighty thud
And it’s broke beyond repair
The van is junkyard bound but she can’t get around
It’s a story we have to share
Van doesn’t run
“All these people are coming back saying, ‘Julie, you are important,’” Duncan said. “They’re using their creativity, and it feels like we’re putting on one of our theater shows. I don’t think I will be the same after this.”
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‘They’ve been so generous’
A used car costs $30,000, whereas a new van can hit $60,000 to $75,000 — and that is before adding the expense of conversion to make it wheelchair accessible.
Julie said she is not looking for a new van and doesn’t need fancy gadgets. She estimates that a used van would cost about $10,000 and the conversion $20,000 to $25,000.
The fundraisers’ goal is to accumulate $30,000 by Dec. 18. The group has 27% of that, or $8,167.
Julie, who received her masters of fine arts degree from Chapman University, said she likes to visit Aquarium of the Pacific, Mile Square Regional Park and the Segerstrom Center for the Arts, but she has not left the house since Oct. 3. She does not have a practical way to travel for medical attention.
Once the fundraiser closes, it takes 15 days to receive the funds from Indiegogo. Her family does not think they will make their relatives’ Christmas party in Yorba Linda this year.
Julie said she is grateful for her friends, family and strangers who have shared her story and offered their help.
“These people have done such a phenomenal job raising money, and it’s hard to fathom,” Julie said. “They’re amazing and they’ve been so generous with their time and energy.”
To help Julie, visit wheelsforjulie.com