Erin Meegan with her husband Isaac who cares for her. Photo / Supplied
Erin Meegan with her husband Isaac who cares for her. Photo / Supplied
One wrong move could cost Erin Meegan her life.
The 34-year-old Perth woman is living with a condition that means she risks internal decapitation — the separation of her spinal column from the base of her skull — which could paralyse her at any moment.
"My condition means that the joints in my neck are hyper-mobile," she said.
"The movement causes brain stem and jugular vein compression and the resulting extreme symptoms are unbearably painful."
"If I can't get the surgery immediately I will continue to deteriorate, the most severe risks being that I may soon become paralysed, that my breathing and heart will stop functioning and my spinal cord could sever, leading to death."
The surgery will fuse her neck and skull together to remove the pressure on her brain stem and jugular veins and stop the sliding of her skull and the dislocation of her neck.
The surgery is not available publicly or privately with insurance as very few neurosurgeons worldwide can perform the task.
It won't be the first serious surgery for Mrs Meegan, who was diagnosed with trigeminal neuralgia, a chronic nerve pain condition, at 24 years old and underwent open brain surgery.
It has been a long road to find out she had an underlying connective tissue disorder.
"I spent two years attending appointment after appointment with specialists and trying various treatments to only get progressively worse," she said.
"Since 2017, I have been primarily bedridden and in pain every day, endlessly searching for ways to improve my quality of life.
"In the years of searching for answers, I have gotten worse to the point that I can no longer care for myself, relying solely on my husband for everything. I have lost all independence and am merely existing until I get the treatment I so desperately require.
"Feeling constant, agonising pain is a cruel existence."
Mrs Meegan said she just wanted to be able to get outside and look after herself again.
"The surgery will stabilise my neck leaving me with severely reduced mobility but will give hope of reduced and managed symptoms and stop my condition from getting any worse," she said.
"I hope to be able to look after myself again, to enjoy the sunshine, enjoy life again. I want to help other women with this terrible condition so that they may stop going through the torture I've been through."
She said she owed her life to the kindness and generosity of others, having already donated more than $80,000 through GoFundMe to help her fund her surgery.
