Bryanna Cowan seeking support to treat rare brain condition

Can you help?: Sancrox resident Bryanna Cowan has a rare brain condition that requires immediate surgery. She has launched a gofundme page to help offset costs. Photo: Peter Daniels
Can you help?: Sancrox resident Bryanna Cowan has a rare brain condition that requires immediate surgery. She has launched a gofundme page to help offset costs. Photo: Peter Daniels

It started with severe headaches that lasted for several days. Then her vision became blurred.

For Sancrox resident Bryanna Cowan those symptoms led to a visit to her doctor where it was quickly established she was suffering from a rare brain condition.

Arnold Chiari Malformation Type 1 is a condition where brain tissue extends into the spinal canal due to a malformed skull, reducing the flow of cerebrospinal fluid. 

Other symptoms will include speech impairment, swallowing difficulties and in some worst-case scenarios, paraplegia.

Diagnosed in April this year, Bryanna is booked for surgery on August 1 at the Macquarie University Hospital. Her treating specialist is Professor Marcus Stoodley.

"It all happened really quickly," Bryanna said. "I had my first doctor's appointment in April and within two referrals I was diagnosed with this rare brain condition.

"Due to the severity of my malformation, I also have a large syrinx in the centre of my spinal chord, this causes permanent damage to nerves all throughout my body.

"Due to the nature of my condition, this surgery can only be performed in a private hospital which my private health will not cover, so I’m facing out of pocket fees of over $25,000."

To help offset those costs, Bryanna has launched a gofundme page with a target of $30,000.

She says the extra funding will be required for any additional costs within the surgery and for follow-up appointments.

The 23-year-old says the surgery is the biggest challenge of her life.

"The impacts are both emotional and mental. Just knowing that it is a quite rare disease worries me," she said.

"There is significant risk with the surgery, but surgery is my only option."

Small fundraising efforts are underway with Macleay Valley Netball assisting the cause with a $556.50 effort.

Rotary Lodge and St Agnes Foundation will also be assisting Bryanna on her journey.

Her gofundme page has already raised close to $4000. All funds will go toward the cost of her operation.

Comments