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Sidney woman launches GoFundMe for rare disease treatment

Courtney MacMurchy was diagnosed with chiari malformation type 1 in March
Courtney MacMurchy enjoys playing with her dog Jupiter. (Courtesy of Courtney MacMurchy).

A Sidney woman is raising funds to receive treatment in Barcelona for a rare, debilitating disease.

Courtney MacMurchy was diagnosed with chiari malformation type 1 in March. Chiari malformation is a disease where the cerebellar tonsils descend down into the spinal column, causing significant pressure on parts of the brain and a reduced flow of cerebrospinal fluid. MacMurchy has a large syrinx in her upper thoracic spine.

MacMurchy has been told she has had the disease since birth, but the symptoms are getting worse as she ages.

She set up a GoFundMe page at on July 16 and has already raised over $8,000.

“The GoFundMe has shown Courtney that a lot of people care,” said Courtney’s mother Maureen MacMurchy. “It’s been amazing and a surprise to us. It’s been a blessing to know that there are so many good people out there.”

“Courtney has realized that she can’t do this alone,” Maureen said.

During the past three years, Courtney has struggled with intense headaches, brain fog, balance issues, back and neck stiffness, fatigue and anxiety. If this is left untreated, the symptoms could become more severe. Courtney is unable to work at this time because of the symptoms, and she is a single mom with a 13-year-old daughter.

“Her symptoms are very difficult,” Maureen added.

“She’s in so much pain. She can’t live out the life she’s envisioned. Courtney’s daughter needs to be given the chance to have a mom who can be a mom.”

The current standard treatment for chiari malformation in North America is decompression brain surgery. Courtney said on her GoFundMe that the outcome of this treatment is short-term relief of symptoms, but not a long-term solution.

“About 30 per cent of the people get worse with this treatment and about 20 per cent are a little better,” Maureen said. “The other 50 per cent are about the same. There are not good options here.”

Courtney has been accepted for treatment at the Institute Chiari & Syringomyelia in Barcelona and her surgery has been booked for Oct. 25. The institute approaches the treatment for chiari malformation and syringomyelia through the tail of the spinal cord known as the filum system. They have successfully completed more than 900 surgeries. Courtney said this low-risk and minimally-invasive surgery offers the best results for improving quality of life and symptom reduction.

“She needs to go,” Maureen said. “We feel that this is absolutely her best option. Without this surgery, there’s nothing but black ahead of her. There’s no other alternatives.”

The quote for Courtney’s procedure was just over $30,000. Courtney’s GoFundMe goal is $40,000 to cover expenses as she plans to remain in Spain for 12 days after the surgery.

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