Tampa Bay Times // March 13, 2018

Online Campaign Brightens the life of girl battling Guillain Barre

By Libby Baldwin, Times Staff Writer

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."

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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.

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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.

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