Allesha Barnfield, from Highfields, South Yorkshire, could become paralysed or internally decapitated at any moment, due to a rare condition which is pulling her brain into her spinal canal
A teenager who feels like a ‘walking death sentence’ is desperately fighting for brain surgery to stop a rare condition internally ‘decapitating’ her.
Allesha Barnfield, 17, started looking for answers three years ago, when her daily headaches became so crippling that she was bed bound and couldn’t bear noise or light.
The former college student, from Highfields, South Yorkshire, had been studying law with dreams of going to university and becoming a lawyer – but they were crushed overnight when she was diagnosed with Chiari Malformation.
The condition, which causes ligaments in the spine to be tense and tighter than usual, sees the brain tissue of its victims pulled into their spinal cord and can eventually lead to paralysis.
It can lead to 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.
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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.
“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.”
Allesha, who lives with her sister and was diagnosed by an NHS doctor in September 2020, is not eligible for surgery on the health service.
The teen took matters into her own hands when she claimed that teachers and doctors refused to accept she was really suffering.
Allesha said: “It wasn’t until 2019 that I started getting these horrible headaches.
“I have had migraines before 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 one GP finally listened to me and I was referred for an MRI and to a neurosurgeon.
“He told me I had Chiari Malformation but never really explained what it was or what that meant.”
After researching Chiari Malformation, Allesha discovered a clinic in Barcelona who are offering a new kind of surgery which promises to eliminate the condition for its victims altogether.
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 doctors say their minimally invasive technique allows them ‘eliminate the root cause and stop further progression of the condition’.
But the costly procedure will set back Allesha £23,000 who has now set up a GoFundMe to cover the procedure and medical expenses.
Allesha said: “I suffer with crippling back pain and neck pain, sickness and fatigue.
“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.”
The NHS was approached for comment.