She has a rare set of conditions (Picture: PA Real Life)
Coronavirus has made the health of an English scholar considerably worse, completely turning her life on its head.
Emily Balfour, 24, who is ‘one trip-up from being internally decapitated’, says catching Covid has exacerbated the agony caused by her ultra-rare conditions.
If she can’t get life-saving stem cell treatment ‘imminently’ she may die – or give up.
Desperate to raise the £150,000 she needs for treatment in the US, Emily says her personal Doomsday clock is ticking as her brain is bursting out of her skull and she could be paralysed at any second.
The treatment will help to stabilise her skeleton.
At her lowest points, struggling with constant pain, Emily, of Exeter, Devon, has even considered assisted dying at the Swiss clinic Dignitas, saying: ‘I can’t be stuck in this nightmare forever.
‘I am starting to lose hope as I have been living like this for so long and have deteriorated so much. ‘
An ice skating accident at 14 led to the discovery of a barrage of alarming conditions that have changed Emily’s life.
Emily today (Picture: PA Real Life)
Emily has EDS which means her joints and connective bodily tissues are weakened (Picture: PA Real Life)
She has Ehlers Danlos syndrome (EDS), a collection of rare conditions affecting the connective tissues that make her joints unstable and prone to dislocation, as well as craniocervical instability (CCI), meaning the area where her skull and spine meet is dangerously unstable.
She has an elongated styloid process – a small pointy bone just below the ear – resulting in pain in her face and neck, as well as Chiari malformation, which means the lower part of Emily’s brain has herniated and is pushing down through the base of her spinal column.
In addition to all this, Emily also suffers with jugular vein compression, causing excessive pressure on the veins in the neck.
She is desperately fundraising for potentially life-saving surgery (Picture: PA Real Life)
Emily, pictured as a child, is fundraising for lifechanging surgery (Picture: PA Real Life)
Catching Covid in early January only accelerated Emily’s deterioration.
She said: ‘It was one of the most terrifying experiences of my life because it affected all the areas I have problems with, such as my neck, brain and skull and it inflamed my face and jaw.
‘It felt like my face and head were on fire. I couldn’t move at all and I had endless migraines and a temperature, I thought I was going to die.
‘It was an out of body experience, it was such extreme pain.
‘I called an ambulance but the prospect of moving was too painful – I couldn’t even look left or right.’
Emily thought living with constant pain was ‘normal’ as a young child, but now having no definitive prognosis means she feels unable to go on.
She said: ‘The specialists can’t give a definitive time, but even just one trip-up and I could be internally decapitated and that would probably kill me.
‘I just desperately want to live a full life and not be stuck in this horror movie of an existence.
Emily has been suffering with extreme pain from a cocktail of conditions since her teens (Picture: PA Real Life)
Emily suffered joint pain even as a young child (Picture: PA Real Life)
‘I want to exist without pain and live a full life but I can’t do that without this surgery.’
In recent weeks, her vision has deteriorated to the point where she cannot see anything out of her left eye, as the neurological impact of her conditions is destroying her visual processing.
This means she is deprived of the joy of reading or watching TV and her weakening sight, cognitive and physical abilities make even the simplest tasks a challenge.
‘I can only eat meals that don’t require actual cooking or often I can’t manage eating at all,’ she said.
‘Sometimes I can’t brush my teeth or brush my hair because of how much pain I am in and it is just too overwhelming.
‘My friends are wondering what to do with their life and I am literally just trying to survive.
‘I am stuck in this cage of a body where I have been in survival mode since I was 19.’
Emily is now raising money on GoFundMe for stem cell treatment, medical care and accommodation in Colorado, USA, known as PICL surgery, as it will repair and strengthen the ligaments that keep her skull stable.
Forced to suspend her English literature degree because of her health problems, her only other option would be even more expensive invasive fusion surgery of the upper neck and spine – she wants to avoid this at all costs.
She said: ‘The fusion would be endless because I have hypermobility in the spine and I would just need more and more features fused.
‘I would lose my mobility and it could just lead to more areas needing the same procedure.
‘The only positive treatment for me would be that being offered in the USA. My only problem is funding it.
‘This is my only chance. The only alternative to this, is to have no life. Being alive but with absolutely zero quality of life is no life to me.
‘To have to ask people for money and beg for charity to survive is horrible, I don’t want to, but I have no choice.
‘I can’t express how much every donation makes me feel this tiny bit less hopeless, and a tiny bit more like I can breathe and feel there is some hope.’
Emily Balfour as a baby (Picture: PA Real Life)
Emily sees this as a final chance at living life in less pain (Picture: PA Real Life)
Feeling she’s losing out, her friends have already graduated and are moving on with their lives.
She said: ‘I should have graduated already. All my friends have graduated and moved on to do Masters degrees or start careers and are establishing themselves in the world.
‘I had dreams and ambitions to get into film writing and creative writing, or even to become a child psychotherapist.
‘It’s impossible for me to imagine achieving that now.
‘But I have to hope that the treatment in the USA can give me that chance.’
To donate towards Emily’s cause, head to her GoFundMe page.
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