Aisha Nozari
A 24-year-old English woman who is ‘one trip-up from being internally decapitated’ is desperately trying to raise funds for life-saving treatment in the US.
Emily Balfour’s brain is ‘bursting out of her skull’ and the English literature student’s illness means she could be paralysed at any second.
Without life-saving stem cell treatment, Emily warns she could die or simply ‘give up’, having considered assisted dying at the Swiss clinic Dignitas.
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Explaining that she ‘can’t be stuck in this nightmare forever’, Exeter-based Emily needs to raise £150,000 ($195,000) for stem cell treatment.
She suffers from a slew of ultra-rare conditions that were first discovered when she had an ice skating accident at the age of 14.
Emily was diagnosed with Ehlers Danlos syndrome (EDS), a collection of disorders 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 also has an elongated styloid process – a small pointy bone just below the ear – resulting in pain in her face and neck.
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On top of that, Emily suffers from Chiari malformation, which means the lower part of her brain has herniated and is pushing down through the base of her spinal column.
Tortured by constant pain, Emily said she is terrified she won’t get the help she needs and catching Covid-19 in early January only accelerated her deterioration.
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.”
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Emily added that the worsening of her symptoms since catching Covid has been alarming.
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.
She said: “I can only eat meals that don’t require actual cooking or often I can’t manage eating at all.
“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.”
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Emily is asking friends, family and strangers to contribute to her GoFundMe.
She needs to raise money for stem cell treatment, medical care and accommodation in Colorado, USA.
Known as PICL surgery, Emily says the procedure will repair and strengthen the ligaments that keep her skull stable.
She said: “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.
“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.
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“But I have to hope that the treatment in the USA can give me that chance.”
You can donate to Emily’s GoFundMe here.