Teenager could be internally decapitated at any moment due to horror condition

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Allesha Barnfield, 17, says she feels like a “walking death sentence” as her Chiari Malformation causes crippling headaches and pain. The teenager desperately wants brain surgery but, as she isn’t eligible for the procedure to be funded by the NHS, she must find £23,000 to fund it privately abroad.

This condition has ruined my life. I had dreams of becoming a lawyer and going to university but I can’t go anymore.

Allesha Barnfield

Allesha wanted to become a lawyer but her hopes of going to university were crushed by the diagnosis.

She 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.”

Chiari Malformation causes ligaments in the spine to be tense and tighter than usual. It sees the brain tissue pulled into the spinal cord and can eventually lead to paralysis, Daily Mirror reports.

It can also lead to so-called internal decapitation, where the ligaments that connect the skull to the spine are severed.

The teen, of Doncaster, South Yorkshire, 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.

“I suffer with crippling back pain and neck pain, sickness and fatigue.

“Before this started I was about to start volunteering at 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.”

The operation, available at a clinic in Barcelona, Spain, promises to eliminate the condition for its victims altogether.

The centre’s medics say the procedure uses a minimally invasive technique to “eliminate the root cause and stop further progression of the condition”.

But, 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. There is a risk the tension will build up again causing the same problem in future.

Allesha, a former college student, was diagnosed by an NHS doctor in September 2020.

She had experienced pain, including severe headaches, for more than a year prior to the diagnosis.

The teenager added: “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.

“Eventually one GP finally listened to me and I was referred for an MRI and to a neurosurgeon.”

The NHS was approached for comment.

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