Woman who could be paralyzed ‘at any second’ makes desperate plea after having covid

An English scholar who is “one trip-up from being internally decapitated” says catching Covid has exacerbated the agony caused by her ultra-rare conditions to the extent that if she fails to 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 USA, designed to stabilize her skeleton, Emily Balfour, 24, says her personal Doomsday clock is ticking as her brain is bursting out of her skull and she could be paralyzed at any second.

At her lowest points, tortured by 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.”

Emily says she is terrified she won’t get the help she needs (Collect/PA Real Life)

She added: “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 kicked off the discovery of a barrage of alarming conditions that have turned Emily’s life upside down.

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.

Emily had knee surgery as a young woman. PA REAL LIFE COLLECT

She has an elongated styloid process – a small pointy bone just below the ear – resulting in pain in her face and neck and she has Chiari malformation. This means the lower part of Emily’s brain has herniated and is pushing down through the base of her spinal column.

And she has jugular vein compression, causing excessive pressure on the veins in the neck.

Already dealing with this catalog of debilitating and agonizing conditions, catching Covid-19 in early January only accelerated Emily’s deterioration.

It was an out of body experience, it was such extreme pain.

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.

“I called an ambulance but the prospect of moving was too painful – I couldn’t even look left or right.”

Emily Balfour suffered joint pain even as a young child. PA REAL LIFE COLLECT

Emily, who says she thought living with constant pain was “normal” as a young child and battled on regardless, but is unable to do so now, has been given no definitive prognosis.

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 Balfour has EDS which means her joints and connective bodily tissues are weakened. PA REAL LIFE COLLECT

She continued: “I want to exist without pain and live a full life but I can’t do that without this surgery.”

And the worsening of her symptoms since catching Covid has been alarming, according to Emily.

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.

Emily Balfour, 24, is desperately fundraising for potentially life-saving surgery (Collect/PA Real Life)

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.”

Emily Balfour with a friend. PA REAL LIFE COLLECT

She added: “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, who is asking friends, family and kind strangers to contribute to her GoFundMe to raise money for stem cell treatment, medical care and accommodation in Colorado, USA, known as PICL surgery, says it will repair and strengthen the ligaments that keep her skull stable.

This is my only chance. The only alternative to this, is to have no life.

Forced to suspend her English literature degree because of her health problems, her only other option would be the even more expensive invasive fusion surgery of the upper neck and spine – which she wants to avoid 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.”

Emily Balfour, 24 (Collect/PA Real Life)

Emily continued: “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.”

Every donation Emily receives gives her a glimmer of hope.

Emily Balfour, 24, hiding her pain on a better day (Collect/PA Real Life)

“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,” she said.

“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.

“Any hope makes such a difference.”

Emily Balfour, 24, has been suffering with extreme pain from a cocktail of conditions since her teens (Collect/PA Real Life)

Despite being confined to her bed every day – aside from trips to the doctors – Emily has found support in her partner, Michael Roberts, 23, who lives in the same block of flats.

Meanwhile, as she watches her friends making plans for the future, she keeps hoping her treatment will mean she can join them, instead of mourning the life she could have had.

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.”

Emily Balfour has Ehlers Danlos syndrome (EDS). PA REAL LIFE COLLECT

She added: “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 to Emily’s GoFundMe go to: https://www.gofundme.com/f/urgent-treatment-for-emily


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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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