'I'm working very hard every second to stay alive, but it's increasingly difficult' Bedbound woman can only stare at ceiling
"I'm working very hard every second to stay alive, but it's increasingly difficult."A genetic condition means ligaments in her neck cannot support her head and she now spends every day staring up at the same patch of ceiling.
One of them is on hand at all times and they never leave their house together in case Jenny needs help. Jenny had been an active, sporty schoolgirl and teenager and was throwing herself into life at university when she first became ill in 2004. It can lead to overly flexible joints, skin conditions and, in rare cases such as Jenny's, fragile blood vessels.
"Various sections of my neck feel like they're being pulled apart in different directions," she wrote"I have to spend 18 hours a day straining to hold my neck and head in a certain position."Instead, they have pinned their hopes on a specialist neurosurgeon in the US, believed to be only one of a handful in the world who understand Jenny's condition.
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