Tuesday, 6 Jun 2023

Teen with ‘death sentence condition’ could be ‘internally decapitated’ any time

A teenage girl, who could be left paralysed or ‘internally decapitated’ at any moment, is desperately raising money for life-changing brain surgery.

Allesha Barnfield from Highfield, South Yorkshire was diagnosed with the rare condition three years ago after suffering crippling headaches and sensitivity to noise and light daily.

The 17-year-old former student had been studying law at college and hoped to go onto university to one day become a lawyer but her ambitions were sidelined by her diagnosis.

The teen Chiari Malformation, a condition that causes ligaments in the spine to tighten up, causing brain tissue to pull into the spinal cord.

It can leave to paralysis and so-called internal decapitation when the ligaments that connect the skull to the spine are severed.

But the teen asked doctors not to share how soon this is likely to happen to her, over fears she couldn’t handle knowing – stating she already feels like a ‘walking death sentence’.

Speaking to the Mirror, Allesha said: “This condition has ruined my life […] 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.”

Sadly Allesha, who lives with her sister, is not eligible for surgery on the health service. So she took matters into her own hands.

After researching Chiari Malformation, Allesha discovered a clinic in Barcelona that are offering a new kind of surgery that promises to eliminate the condition for its victims altogether.

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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.

At the time of publishing, Allesha has raised just over £17,000 towards her goal.

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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.”

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