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Young Woman Spends 20 Hours A Day In Bed To Avoid Internal Decapitation

Erin Meegan has been bedridden since 2017.

The 34-year-old, who's originally from Molesey in the UK and is now based in Perth, risks internal decapitation -- the severing of the ligaments that attach the spine to the skull -- every time she moves her body.

To limit her chance of death, Erin spends 20 hours a day lying flat on her back.

After years of seeking answers, Erin has been diagnosed with a series of serious illnesses that could result in paralysis or death the longer they stay untreated.

Erin before she became unwell. Image: Supplied.

Erin, together with her husband and primary carer Issac, are desperately fundraising to travel to Spain where she will receive life-saving surgery in November.

But their lives weren't always like this.

Erin is known by those that love her as a happy, active and determined individual. She relocated to Perth in 2013, where she met Isaac.

In 2015 the pair married and embarked on a four-month-long honeymoon encompassing South-East Asia and the east coast of Australia.

Erin and Issac on their wedding day in 2015. Image: Supplied

Once Erin and Isaac returned from their honeymoon they found a place to live and landed jobs in HR and engineering, respectively. Soon after Erin started to notice some issues with her health.

"It's not something that we would have anticipated. We were having fun, we were travelling and her health went downhill," Isaac told 10 daily.

Eventually, Erin was diagnosed with Chronic Fatigue Syndrome (CFS) but the treatments she was prescribed made her condition worse. Chronic Migraine and Cerebral Spinal Fluid Leak were also investigated and after countless MRI, X-Ray and CT scans the results were inconclusive.

Erin then contacted a respected rheumatologist in Perth and she was diagnosed with Ehlers Danlos Syndrome/Hypermobility Spectrum Disorder (EDS/HSD) -- a disease where people are likely to suffer frequent dislocations, joint pain and hyperextensible joints.

Erin and Isaac loved travelling before she became bedridden. Image: Supplied

Erin also saw a cardiologist who diagnosed her with Postural Orthostatic Tachycardia Syndrome (POTS) --  a condition where a change from lying to standing or sitting can cause an abnormal increase in heart rate.

Erin then spoke with Dr. Gilete -- a neurosurgeon based in Barcelona, Spain. Gilete diagnosed her with Craniocervical Instability (CCI) and Atlantoaxial Instability (AAI)  and recommended she have surgery.

CCI is a condition where the ligaments in the neck are too weak to support the head, causing deformation and compression of the brain stem and severe cases can lead to paralysis and death.

AAI refers to the excessive movement of the junction between the spine's top two vertebrae, which can cause problems with the brain stem, similar to CCI.

In severe cases, this causes internal decapitation.

Erin's condition sees her brain stem compressed and deformed. Image: Supplied.

Erin's surgery is booked for November 11 and it's likely she will take 12 months to recover completely.

"We have been focused on fundraising ... we are feeling nervous and stressed about the surgery experience rather than if it will be possible ... so there is a bit of a shift now," Isaac said.

The pair will travel directly to London from Perth in business class so Erin can lay down the entire journey. After a break, where they will say with family in London, the pair will fly to Barcelona.

Erin and Isaac finally have a plan, but the challenges are far from over.

“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, my spinal cord could sever leading to death," Erin said.

Erin has been bedridden since 2017. Image: Supplied

The surgery will stabilise her neck leaving her with severely reduced mobility. Despite this, the procedure offers Erin hope of reduced symptoms, which could stop her condition worsening.

A GoFundMe page set up to save Erin's life has -- at the time of publishing -- received nearly $67,000 in donations. Erin needs another $30,000 by November 1 so she can pay for the surgery ahead of time.

READ MORE: GoFundMe: How Online Crowdfunding Has Changed The Way We Give

“I have gotten worse to the point that I can no longer care for myself, relying solely on my husband for everything ... I cling to the date in November as a lifeline to get me through," Erin said.

Erin spends about 20 hours a day in bed. Image: Supplied.

Both Erin and Issac said they've been "blown away" by the generosity of complete strangers who have donated to their cause.

"I hope to be able to look after myself again, to enjoy the sunshine, enjoy life again ... I owe my life to the kindness and generosity of others.”

READ MORE: Australia's 'Egg Boy' Just Donated $100K To Christchurch Victims

Contact Siobhan at skenna@networkten.com.au 

Featured image: Supplied.