Thursday, September 20, 2018
News Roundup

Online campaign brightens the life of girl battling Guillain Barre

PALM RIVER — In many ways, 7-year-old Dior West appears to be a perfectly normal little girl.

She’s all about the current slime craze and loves to whip up batches of the colorful goo to sell to her neighbors. She has lots of friends at school and can rap like her favorite artist, Cardi B.

Dior’s spirited outlook belies the fact she uses a wheelchair, and machines that help her breathe and eat. But thanks to an uncommon online effort that raised more than $20,000 in five hours, Dior and her mother Candace Thornton received a boost that has their home, as Cardi B. might say, dripping in finesse.

•••

In April 2016, Dior was recovering from a case of walking pneumonia when her mom tried to get her up for school.

"Stop messing around, Dior," Thornton, 29, remembers telling her when Dior didn’t get up.

Then Thornton, a third grade teacher at Foster Elementary School in Tampa and single mom who given birth to her second daughter just two weeks before, realized that her daughter wasn’t playing.

By the time paramedics got Dior into an ambulance, her vitals were already fading fast. At the hospital, doctors performed a tracheostomy, a surgical procedure that opened her neck so she could breathe.

The diagnosis: Guillain-Barre syndrome, a rare disorder in which the body’s immune system wages war on the nerves, often leaving victims fully paralyzed while it attacks. It left Dior in the hospital for three months.

The disease usually reverses itself within a year or two, but Dior is two years in and doctors are unsure of her prognosis.

"She’s usually pretty upbeat," Thornton said. "But she’ll have her moments where she’ll cry and ask if she’s going to be like this forever."

•••

Dior now has metal rods in her back to correct a severe curvature in her spine caused by atrophied muscles. Next up is surgery to remove her diaphragm on her left side, which is paralyzed because her spine has begun to crush it.

Thornton has used up all of her paid leave, paid for several treatments out of pocket that insurance didn’t cover, and traveled all over the southeast to find doctors who could do the surgery Dior needed or physical therapists who would accept a child on a ventilator.

"If you have a heart attack or a brain trauma, you’re in great hands here in Tampa," said Thornton. "If you have something rare, you’re out of luck."

When Dior came home with her new power chair, Thornton realized that the new car and house, just east of Palm River, she had purchased right before Dior got sick weren’t going to work for her host of new needs.

The biggest problems were the carpets, which trapped allergens and grime that made it harder for Dior to breathe; the bathroom, which Dior couldn’t use without at least two people helping her; and the doorframes, which were too narrow for Dior’s chair and left holes in the drywall from hitting them too much.

A health coordinator suggested that she fill out an application for a program called Chive Charities.

•••

The Chive is an entertainment website that bills itself the place to go online for "humor, hotness and humanity." An initial visit will yield funny videos and slideshows of pretty girls, but there’s more to the media group than its home page might suggest.

The site’s users, called "Chivers," began reaching out to the owners on behalf of other users who were going through hard times, asking if they could help, and the nonprofit Chive Charities was born.

"We were drawn to helping the overlooked causes, the ones you don’t hear about every day that also don’t receive funding for research," executive director Brian Mercedes said.

The site often focuses on helping veterans and first responders with medical needs, underfunded special education initiatives and people with rare medical conditions, like Dior.

Mercedes said that many requests can be fulfilled in a week or so by monthly donors, but sometimes the recipient’s need is so great that they activate a flash campaign using GoFundMe and set a specific financial goal.

Initially Chive was only going to purchase a brand-new ADA accessible van for Dior, so she could get to school. But when organizers realized how ill-suited the house was for her, they decided to go ahead with a flash campaign.

•••

Dior’s flash campaign went live at 4 p.m. on Feb. 7 with a goal of $20,000.

By 10 p.m. on that same day, the goal had been met entirely from the Chivers’ donations; some people gave large amounts, but Thornton said the majority of the donations were small, $10 or $20.

Construction began last month on transforming the house; a week later, new wood floors had been installed, the doorframes had been widened, and a brand-new bathroom was just about finished.

"It was amazing, hearing my phone constantly going off with donation notifications for hours," Thornton said. "Complete strangers gave us the money to do all of this."

Thornton has risen to the challenges of her new reality, and says she has learned not to take no for an answer when it comes to advocating for a sick child.

"Just do your research; there’s options out there, you just have to find them," she said. "When the doctors say no to something, just keep looking and find your own way. You can always get a second opinion."

•••

Dior tried out her new floors, rolling down the middle of the living room and posing like a model on a catwalk. She complained that her mom won’t let her get an Instagram account yet and insisted that she should be famous by now, rapping a few lines from Cardi B’s Bodak Yellow.

"She’s been trying to get a reality show since she was three," Thornton laughed.

Dior has a long road ahead, but her mom is hopeful that the help they’ve received will make it easier to speed up her daughter’s recovery.

"We’re forever grateful, and I just can’t wait to pay it forward one of these days," Thornton said. "It makes you realize that a lot of people giving a little bit can make a huge difference in someone’s life."

Contact Libby Baldwin at [email protected] Follow her at @LibBaldwin

   
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