A 26-year-old woman with a rare condition that means she risks being internally decapitated is desperate to raise £35,000 ($44,000) for lifesaving surgery that will fuse her spine and skull together.
Zoe Elliott has been experiencing terrifying seizures and fainting fits for as long as she can remember. And after she was left hardly able to hold her own head up, she was finally diagnosed with craniocervical instability (CCI) in December 2019.
The rare condition means the area where her skull and spine meet is unstable.
Elliott, who lives near Salisbury, England, now lives in fear of her head detaching itself from her body.
Unable to work, she has now launched a GoFundMe page, asking strangers to help raise £35,000 for surgery to fuse her C1 vertebra to the base of her skull. The surgery will not only restore the full range of movement to her neck, but it will also give Zoe her life back.
Zoe revealed that she used to be a carer for her mom Lisa, 61, who has metastatic breast cancer, which has now spread to her bones. She explained that the surgery will once again allow her to help her mom more, saying:
"It’s like we’ve reversed roles and she’s looking after me now. I really worry about what will happen if I don’t get the surgery – even the phrase 'internal decapitation' scares me, as it sounds so horrible.
"I’ve been told it could only happen with a really strong impact, like being in a car accident, but it’s still scary."
She continued: "I’m trying to raise a lot of money and have been criticized online for turning to fundraising.
"One person even accused me of wanting people to pay for my cosmetic surgery, when there’s nothing cosmetic about it – but as I can’t work, I have no other choice.
"It would mean everything to me. I’m 26 now, and I keep thinking that, just maybe, by the time I turn 30, I can have some normality, and regain the time I’ve lost."
Even throughout her childhood, Zoe experienced symptoms of her future diagnosis - but said she didn't know anything was wrong as she had never known life without them. She explained: "I was hyperflexible, but very weak at the same time. I’d do gymnastics at school, but, even at my fittest, couldn’t do a single push up. I’d also find that my joints would dislocate easily.
"At first, I just thought that was normal – it took a while for me to realise that this wasn’t something that happened to everyone."
When she was around 14 years old, Zoe became prone to fainting episodes, seemingly with no definitive trigger.
"I got horrendously bullied over it," admitted Zoe. "People would accuse me of faking my fainting fits, or they’d do horrible things to try and bring me round, like smear food in my hair."
After seeking medical advice, she referred for a series of examinations, including a tilt test, where she was strapped to a motorized table at different angles while her body’s reactions – including her heart rate, blood pressure, and light-headedness – were monitored.
Then, when she was 15, Zoe was officially diagnosed with postural tachycardia syndrome (PoTS) – an abnormal increase in heart rate that occurs after sitting or standing up.
Zoe had hoped that a diagnosis would mean she could start to manage her symptoms and restore some normality to her life. However, when she turned 16, Zoe also started having seizures.
Recalling her first one, she said: "I remember texting my mum saying I wasn’t feeling well and was going to lie down for a few hours. By the time she got home, she couldn’t wake me. I was completely unresponsive. No matter what she tried, I couldn’t be roused.
"She rang 999 and I was taken to hospital. After I eventually came round, the doctors said they thought it was because my body had gone into shock."
After undergoing neurological tests, nothing detected anything wrong with her brain, and Zoe was given anti-seizure medication to manage her fits.
Desperate not to give bullies another reason to target her, Zoe did her best to keep the terrifying episodes a secret.
She said: "Over the years, I was put on 13 different types of medication – but nothing seemed to work.
"I was still having seizures every week. They’ll usually be grand mal seizures, which are what most people imagine when they think of somebody having an epileptic fit, where your limbs jerk about and you sometimes lose consciousness.
"I could feel them coming on. I’d get pins and needles across my face, and it would almost feel as if I had butterflies in my head. At college, I’d take myself off to the toilet so nobody saw me have a seizure."
Last year, a 25-year-old Zoe received more bad news when she was asked during a routine doctor’s appointment if she had ever been tested for joint hypermobility syndrome - something that would explain why she was so flexible in her childhood.
Tests later confirmed that her mobility was actually symptomatic of Ehlers-Danlos Syndrome (EDS), a rare condition affecting the connective tissue.
"That, combined with the PoTS, answered a lot of questions I’d had about my symptoms, like how my joints would easily dislocate, and why I’d faint," Zoe explained, adding: "But I didn’t think that was the whole story. There were still the seizures, and other odd little symptoms I’d had like difficulty swallowing and hearing loss."
Following her EDS diagnosis, Zoe joined a number of online support groups, where she was urged by a stranger to look into CCI.
"I got added into another group about CCI, and at first, I was skeptical,” she said. "But reading the posts, I couldn’t believe it. Every symptom I’d ever had was there. I mentioned it to my NHS doctor, who hadn’t even heard of it at first, but after looking into it, they agreed that it was very likely I had it.
"Next, I took the little money I had and put it all towards going to London for a private appointment with a specialist in December 2019, who did some tests and officially diagnosed me with CCI and atlantoaxial instability (AAI), meaning both the ligaments and the vertebrae around my neck and spine are unstable.
"They did a scan to see what my neck looked like when I moved around, and everyone was open-mouthed at the results. My head went right back, almost as if it was going to come off.
"A doctor in Barcelona, Spain, who is renowned for treating CCI and AAI, was recommended to me and backed up the diagnosis, telling me my only hope was to have surgery to fuse my neck to the base of my skull.
"I got the diagnosis three times in total. The final time, I burst into tears. Everyone thought I was upset, and of course, it was terrifying to hear, but mostly I was relieved."
"I finally had a name for what was wrong with me and understood that all my symptoms fell under the same bracket,” she said. “But more than that – after being told I was faking it by bullies at school, I had been believed."
Unfortunately, the complicated surgery she requires is unavailable on the NHS, meaning Zoe has no choice but to fund a private operation, leading to her starting a GoFundMe page.
Barely able to lift her head, everyday tasks like washing and dressing don't come easy for Zoe. As a result, she spends most of her time in bed, where she sleeps upright, propped up by pillows.
"If I lift my head too suddenly, I’ll faint or have a seizure. Where my head is so unstable, my brainstem is being impacted, which is theoretically what’s causing seizures.
"Even simple things like showering, I have to do in little stints, a few minutes at a time. I sometimes struggle to even swallow. I’m mostly on a liquid diet of special shakes, and drink a lot of water too, as that helps with the PoTs, but I find myself choking even on that.
"I get terrible brain fog and memory problems too, and sometimes know what I want to say, but can’t get my words out in the right order."
Despite the daunting prospect of major surgery, Zoe hopes her fainting fits will finally be alleviated, as she will be able to build up the surrounding muscle - ultimately strengthening her skull and spinal cord.
"I have a long road ahead of me, but all I want is to do those things most people take for granted,” she said. "It has been difficult living with an invisible illness, as people sometimes assume that, because you look fine, you are.
"When I was younger, I’d push myself more to go out with friends, and invariably get comments about how I wasn’t well enough to work, but was well enough to socialize. People are only seeing a snapshot, though – they don’t see the daily pain I live in, and how a simple outing will take weeks to recover from.
"This surgery would change my life, but it’s not like I’m asking people to help me go paragliding or anything extreme. I have lost my 20s to this, and I just want to do the simple things like get a coffee with my friend, or be able to work."
Her mom, Lisa, said the hardest part about all of this is having to see her daughter in pain every single day:
"The biggest strain is seeing Zoe in day to day pain. I even have a baby monitor and get up through the night to check if she is breathing, because she has seizures and can only sleep upright on her back with pillows supporting each part of her body.
"She always tries to be happy and social, but I know how depressed she is by the pain."
If you can help Zoe on her journey, head over to her GoFundMe.
