A woman is having to endure “relentless levels of pain” every day as she suffers from a condition that's causing her brain to slip down her spine. Emily Balfour, 25, who has been left mostly bed bound, is pleading for help to raise funds for lifesaving treatment in the US that would stabilise her skeleton.
Emily, from London, faces permanent disability and is at risk of paralysis if she cannot raise the £200,000 she needs for the procedure. Known as PICL, the treatment involves injecting stem cells into the spine through the back of the mouth.
Emily's health battle began when she was 14-years-old following an ice-skating accident. She went on to be diagnosed with Ehlers-Danlos syndromes (EDS).
According to the NHS, EDS is a collection of rare conditions affecting the connective tissues that cause joints to become unstable and prone to dislocation. As well as craniocervical instability (CCI), which causes the area where the skull and spine meet to be dangerously unstable.
Emily's brainstem has been damaged so severely that her body is no longer functioning the way it should be, causing her extreme fatigue, periods of paralysis, and loss of vision. The pain and discomfort means Emily is regularly in and out of hospital, with symptoms that threaten irreversible physical disability and potentially death if not rectified.
Emily also suffers with Chiari malformation, which means the lower part of her brain has herniated and is pushing down through the top of her spinal column. She has even been told by medical specialists that some of her brain is no longer in her skull.
“My health is continuing to deteriorate but I still haven’t managed to raise enough money to get the treatment I need in America,” she said. “It would be lifesaving for me and, unless I get the treatment, my life is on pause and stagnated, I’ve become largely bed bound.
"And this issue doesn’t just affect me, there are so many people with this condition who are struggling to get funds for treatment abroad. Money is the barrier for us being able to live our lives.”
Emily once had dreams of working in film, but she is unable to complete her degree and is also not able to work while she struggles with her health. She said: “I’m not able to participate in life, I’m unable to work and I keep having to delay the completion of my degree. I have limited vision, I can’t see out of my left eye and I have recently dealt with limb paralysis.”
Emily was rushed to hospital earlier this year after her left arm became paralysed and swollen. “It looked like a dead person’s arm, I feared I’d never regain mobility of it." She said.
“It turned out I was struggling with blood flow to the arm, and I’ve regained limited use of my arm, but I’m high risk of it happening again. I’ve seen people with these conditions lose function of their arms completely and that obviously concerns me because I live by myself. I want to keep my sense of agency but it’s getting more and more difficult.”
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Emily hopes to raise £200,000 for multiple stem cell treatments, medical care and accommodation in Colorado, USA, to repair and strengthen the ligaments that keep her skull stable. “Getting treatment will change everything,” she added.
“I wanted to write and make films, but I am now more interested in medicine and want to get a psychotherapy qualification and work in that field. I used to be so passionate about movies and reading, but because of my brain and vision issues, I’m restricted to audiobooks now.
"I can’t even do basic things like watching TV, that once brought me so much joy. I just want to be able to complete my degree and have a normal life and not be stuck in this living hell.”
To donate to Emily’s fundraiser, visit: www.gofundme.com/f/urgent-treatment-for-emily.
