Late one Friday night last year Ellie Miller received the results of her daughter Asha's MRI scan and was horrified.

It found Asha was suffering from Chiari Malformation, a rare neurological condition in which the bottom of the brain descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine.

Symptoms include severe headaches, blurred vision, dizziness and even severe pain felt when laughing or sneezing. If left untreated, it can cause paralysis, permanent disability and, in some cases, death,

Ms Miller, a nurse, had heard of Chiari Malformation but never come across it over the course of her career. So that Friday night, she went online to find a support group.

She quickly found the Chiari and Syringomyelia Australia Facebook group and connected with one of its administrators, Queanbeyan woman Trysh Logan Jones.

"Within hours, I had support, I had several recommendations and I had options," she said.

A key recommendation was that she get in contact with a leading specialist at the Macquarie University Hospital.

"Within a week, Asha was in hospital for the first procedure to have a look at the inter-cranial pressure and within a couple of weeks, had surgery," Ms Miller said.

"Trysh was there with us every moment."

It turned out Ms Logan Jones had the same surgery just two months before Asha and was able to advise her on what to expect. The major surgery removes part of the skull and spine to make room for the brain. It does not require the head to be shaved, so Asha dyed her hair blue for the occasion. She had 34 staples in her head as a result of the surgery.

Ms Miller drew on her mortgage to pay for the surgery and ongoing costs. Extensive rehabilitation followed, and continues, including physiotherapy and hydrotherapy.

The whole journey also forged a strong friendship between Ms Logan Jones, 48, and Asha, 16. They told their story as September is Chiari Malformation Information Month.

"Trysh has been an amazing support to me throughout the entire process," Asha said.

"Even as I was going into surgery, she sent a text to mum and it made me feel so happy and confident and I wasn't worried at all."

Ms Miller is convinced Ms Logan Jones– and finding her through Facebook – helped save Asha's life.

"I think she did. She made the whole process so much easier than it could have been," she said.

"There was a lot of pressure in Asha's brain and the surgeon said it was just a matter of time before things became critical, with permanent damage."

Ms Logan Jones and Asha will never be cured of their condition. But their quality of life has been improved. The headaches and migraines are gone. But further surgery could be required in the future.

In the meantime, Ms Logan Jones said she works to ensure the Facebook support group is a safe place where patients and their families can ask questions and speak their mind in a respectful environment.

"You don't feel alone," she said.