Brain condition makes life a struggle for family

Jason and Ashley Garris along with daughters Adley and Aspen.

Jason Garris and his wife Ashley have been put between a rock and a hard place, and a friend is trying to help.

Ashley has been suffering from major complications of a brain condition called Idiopathic Intracranial Hypertension, which has caused her partial paralysis and vision loss, seizures and constant headaches among other issues. Jason, a former Marine and now a lab technician at Valero St. Charles refinery in Norco, wants to be there to take care of her and the couple’s two children, Adley and Aspen, but his shift-based schedule can entail very late hours, and the family cannot afford the loss of income that would come with a shift to a different job.

“It’s been tough … she’s not well enough to do everything with the kids, running around trying to keep up with the house and everything else … and at the same time, life keeps going on,” Jason said. “You still have to pay the bills, and with the medical costs, it’s a juggling act.

“It gets to the point where the bills become twice as much as the money, and you have to prioritize, keep the lights on and the utilities paid.”

Tougher for him still is to see his wife in the pain she’s had to endure.

“It takes so much out of her,” he said. “We just pray for God’s grace.”

Ashley’s condition is not a new one. The 31-year-old has lived with it for the past 18 years after being diagnosed as a high school freshman, and it’s altered her life in many ways, including having to leave nursing school for medical reasons — and ultimately those aspirations behind her.

But recently, the most debilitating complications have arisen. On May 30, she had a shunt placed to drain fluid from her brain to relieve vice-like pressure she felt in her head. That seemed to do the trick until mid-August, when while picking up her daughter from school she suffered stroke-like symptoms and was rushed to Tulane Hospital. Doctors learned that while the shunt was working, her body was attempting to reject it, causing inflammation that resulted in cerebral edema.

“I was conscious, but couldn’t talk or anything,” Ashley said. “My body was trying to reject the shunt, and that’s extraordinarily rare. It was really rough and I’m still dealing with effects of it.”

The couple met Joseph Willis through functions at St. Clement of Rome school, where Willis’ son, Liam, is a classmate of Adley. He learned of the Garris’ struggles from teachers at the school, and he was determined to find at least some way to offer a helping hand.

[pullquote]“It takes so much out of her. We just pray for God’s grace.” – Jason Garris[/pullquote]

“They’re trying to raise these two kids and are struggling financially … she is limited, physically, in what she can do now,” said Willis, who started a GoFundMe (titled Ashley Garris and Family) to benefit the family.  “They’re struggling to stay afloat. Things have gotten worse with her health, and it’s tough when you can’t realistically share a schedule that coincides.

“She can’t drive by herself or really even be alone, so it’s made it incredibly difficult to care for those girls.”

Willis, who works in the medical field himself, said it’s hard to grasp when someone gets a diagnosis that all but tells them their illness represents their new reality.

“They tell you, ‘you’ve got this forever,’” Willis said. “It derails your career hopes … you grow up with certain aspirations and goals. When you mess something up, it’s one thing. But she had no choice in this.”

Ashley concurred, noting navigating through the emotional trauma can be as difficult as pushing through the physical ailments at times.

“You do go through depression. Especially having to be on heavy steroids for weeks … I couldn’t sleep for maybe one hour the whole day,” she said. “You’re always hungry, your heart is pounding and your anxiety is through the roof.”

Willis said the idea for a fundraiser was simply born of a desire to remove some stress from the equation, even if only a little. Many have stepped up to help, and nearly $2,000 has been raised since it was posted.

“I know the last thing she needs is more stress on a daily basis,” Willis said. “Even if it’s just a reprieve, hopefully it can be of some help.”

Both Ashley and Jason noted it has provided them a lift, as have the kind acts of others.

“We’re just trying really hard to navigate this, but you have to keep going,” Ashley said.

What is Idiopathic Intracranial Hypertension?

  • A condition due to high pressure within the spaces that surround the brain and spinal cord.
  • These spaces are filled with cerebrospinal fluid (CSF), which cushions the brain from mechanical injury, provides nourishment, and carries away waste.
  • The most common symptoms of intracranial hypertension are headaches and visual loss, including blind spots, poor peripheral (side) vision, double vision, and short temporary episodes of blindness. Many patients experience permanent vision loss.
  • Because the symptoms of IIH can resemble those of a brain tumor, it is sometimes known by the older name pseudotumor cerebri, which means “false brain tumor.”

 

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