How a blister led to diagnosis of ‘most painful’ disease

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Bella Macey had a simple foot infection. A month later, she now lives with excruciating pain every day. 7NEWS

No known cure exists.

“We were told that because of Bella’s age and early diagnosis, outcomes can be much, much better, but once we looked into it and connected to other families, you know, the worry grew.A month on from her diagnosis, Bella has lost mobility in her right leg and is mainly bedridden, sometimes using a wheelchair to get around.She has developed hypersensitivity in her leg, meaning even the most gentle touch is excruciating.

While Bella did receive some treatment in hospital it didn’t help at all but rather made her pain worse, according to her dad Chris. The treatment program is a minimum of 13 weeks, but it is unclear how long Bella will have to be in the US.“She doesn’t know what’s wrong with her, although she’s very clever, you know .... she still doesn’t understand why nothing’s helping the pain go away and why this has happened,” she said.With travel costs, the treatment is expected to cost more than $235,000.Emma said the response to the GoFundMe has been “incredible”.

 

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