A teenage girl has said she feels like "a walking death sentence" after discovering that her crippling headaches were caused by a rare condition that could paralyse her at any moment.
Allesha Barnfield started suffering daily migraines three years ago, and they became so bad that she now spends every day in her room in complete darkness, unable to tolerate any light or noise.
In September, 2020, she was diagnosed with chiari malformation - a condition that causes ligaments in the spine to be tenser and tighter than usual and brain tissue to be pulled into the spinal cord.
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This can lead to paralysis and 'internal decapitation', when the ligaments that connect the skull to the spine are severed. This could happen to Allesha at any time, after she opted not to be told by doctors how long she has before her ligaments rupture.
However, when she was diagnosed, she was also told that she was not eligible for surgery on the NHS and, as a result, is now fighting to raise money for brain surgery that could save her life, reports The Mirror.
The former college student, 17, from Highfields in South Yorkshire, who had dreams of going to university and becoming a lawyer, said chiari malformation had "ruined her life", and caused her to suffer with crippling back pain and neck pain, sickness and fatigue.
“I spend every day confined in my room in complete darkness because I can’t bear the light," she said. “I find the smallest noises excruciatingly painful, even when someone is talking to me I have to ask them to whisper.
“When they told me what would eventually happen to me I just broke down. I asked them not to tell me how long I had based on my scans because I just don’t think I can handle knowing. I feel like a walking death sentence.”
Despite experiencing constant "horrible" headaches, Allesha struggled to get her suffering taken seriously by doctors and teachers.
“I have had migraines before," she said. "But I knew that these weren’t migraines because I could physically feel the back of my head shocking me. It started out as once a week but then it got to the point where it was everyday, all day.
“I took myself to the doctors and I was desperately trying to get people to believe me and listen to me. I felt like I was being treated like a child, which I know I am but I also know my own body."
Eventually, a GP listened to Allesha and referred her for an MRI and an appointment with a neurosurgeon, who told her she had the condition, "but never really explained what it was or what it meant".
After researching chiari malformation for herself, Allesha discovered a Spanish clinic offering a new kind of surgery which could rid her of the condition completely.
In the UK, surgeons use a method called decompression surgery whereby a piece of bone is removed from the spinal cord to relieve the pressure - but there is a risk that the tension will build up again causing the same problem in future.
However, at the Filum System clinic in Barcelona, doctors claimed their minimally invasive technique allowed them to "eliminate the root cause and stop further progression of the condition".
The surgery is costly, however, and will set Allesha back £23,000, with the teenager setting up a GoFundMe to cover the cost of the proceudre and medical expenses, as she fights to get her life back.
She added: “Before this started I was about to start volunteering in a law firm and I was at college but I had to quit. From the very beginning I have been dealing with this by myself.
“To get this surgery and have my life back would mean everything - I just want to be alive.”
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