'United Nite Walk' benefits those fighting rare brain disorder

'United Nite Walk' benefits those fighting rare brain disorder

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At first glance, you see a regular Florida family hanging out at a local park on a typical rainy spring day.  But take a closer look, and you find true grit, grace, and heart. 

"I always started every day with nausea, really bad headaches.  I always knew something was wrong," says Brianna Jones.

For eight years, Brianna battled nausea, dizziness, sleep apnea, memory loss and general  pain.  "I never did well with math, because that requires memory, and my memory is ruined," she says.

Brianna's mother, Tonya Jones knew something was wrong, but didn't know what it was.  "Doctor after doctor, and they finally referred her to a specialist."   

That specialist gave Brianna an MRI, and then the long-awaited, but scary diagnosis.

"When they told me I had Chiari, I was like, 'OK, now I know what I have, but I have no clue what it is!'  Then my mom went home and researched it, and it was so scary to learn that what I have is so serious," she says.

Chiari Malformation is a brain defect where the cerebellum is too big for the skull.  It puts a lot of pressure on the brain stem and the brain, causing thirty different symptoms.  Because it's so rare, it's not always diagnosed immediately.  In Brianna's case, that lack of information only made matters worse.

That's why mom and daughter now organize a yearly walk.   It's called the United Nite Walk, because even though Brianna has already undergone brain surgery, there is no cure, but maybe there could be.

"It's still hard," Brianna tells us.  "My headaches are a little better, but I still struggle every day to get out of bed.  A lot of times I'm not feeling well."

Tonya adds, "Don't give up the fight, find a doctor who will listen to you.  Don't give up hope.  
We have to find a cure."

The United Nite Walk is Saturday, June 15, at the South Econ Community Park in Orlando.

For more information, click here (PDF).

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