A MODEL with a rare brain condition says she fears never seeing her two kids grow up — as she tries to raise £26,000 for pioneering surgery abroad.
Deana Hendry, 32, needs specialist treatment after being told there was nothing the NHS could do to permanently fix a malformation, which makes the back of her brain sag through the base of the skull.
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Deana, diagnosed in 2021 after suffering symptoms for ten years, said: “Nobody knew what was causing it but I had chronic head and neck pains.
“When it got really bad and I went to the hospital, at first they thought I’d had a stroke.
“Then I got a phone call telling me I had an incurable brain condition.”
The model, of Banbury, Oxon, was diagnosed with Arnold-Chiari malformation, which affects roughly one in 2,000.
Most have no symptoms and never even realise they have it.
There are four main types, but type 1, called Chiari I, is the most common and occurs when the lowest part of the back of the brain extends into the spinal canal.
Many cases are triggered by part of the skull not being large enough to contain the brain.
The condition is normally treated in the UK with decompression surgery, where a chunk is taken from the back of the skull to allow the brain to expand away from the spinal cord.
If left untreated it can cause early-onset dementia or put too much pressure on the spinal cord, causing disability.
Deana, mum to Bartholemew, four, and Isabella, two, said: “The fear of leaving them to look after me, and the fear of leaving them without me, is what’s making me find a way to get through it.”
She is hoping to fund trial surgery in Barcelona, Spain, to permanently stop the malformation growing.
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