A TEEN has told how she could be paralysed – or even internally decapitated – at any moment as a result of her terrifying brain condition.
Allesha Barnfield, 17, says she feels like a "walking death sentence" as she desperately fights to get brain surgery before it's too late.
The former college student, from Highfields, South Yorkshire, said her daily headaches became so crippling three years ago she was bed bound – and couldn’t bear noise or light, The Mirror reports.
Allesha had hopes of becoming a lawyer, but her dreams were crushed overnight when she was diagnosed with Chiari Malformation.
The condition causes ligaments in the spine to tense up and sees its victims' brain tissue pulled into their spinal cord.
It can eventually lead to paralysis and even so-called internal decapitation, when the ligaments that connect the skull to the spine are severed.
Petrified by the prognosis, Allesha has opted not to be told by doctors how long she has before this happens.
And she is now desperately fighting for private surgery to prevent the worst.
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The teen said: “This condition has ruined my life. I had dreams of becoming a lawyer and going to university but I can’t go anymore.
“I spend every day confined in my room in complete darkness because I can’t bear the light.
“I find the smallest noises excruciatingly painful, even when someone is talking to me I have to ask them to whisper."
She added: “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.”
Allesha said she started getting the "horrible headaches" in 2019, where she would "physically feel the back of her head shocking" her.
She said they started out once a week but soon started happening every day, all day.
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.
The teen said doctors and teachers failed to take her constant pain seriously and she had to fight to get her condition diagnosed.
She was finally diagnosed by an NHS doctor in September 2020, but found she was not eligible for surgery on the NHS.
She has since found a clinic in Barcelona which offers a new type of surgery promising to eliminate the condition.
And Allesha has now set up a GoFundMe page to try and raise funds for private treatment – which would cost her roughly £23,000.
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.
At the Filum System clinic, Spanish medics say their technique allows them "eliminate the root cause and stop further progression of the condition".
Allesha writes on her GoFundMe page: "Before this, it was my absolute dream to study law in university, but now, it’s to just be alive.
"It would mean the absolute world to me if you would donate money to help me get the surgery I need to keep living and not waking up every day knowing I’m worse and worse."
The NHS has been approached for comment.
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