Family’s torment over girl’s cruel disease

An Australian family has opened up about the anguish they’ve faced after their daughter was diagnosed with a rare and debilitating illness.

Their trip to Fiji turned into a living nightmare after a blister she developed became infected and caused her foot to become inflamed.

Often called the “most painful condition” known to mankind, 10-year-old Bella Macey developed complex regional pain syndrome (CRPS) while her family was on their first trip overseas after the pandemic.

The rare and incurable syndrome causes chronic and extreme pain. Bella Macey has pain that shoots up her entire right leg.

“It‘s all sharp, it’s burning, it’s tingly. It’s all sorts of different pain I never knew was possible,” Bella described to A Current Affair.

The previously healthy young girl can no longer take part in the activities she enjoys, or even walk or run, without causing debilitating pain.

“I can’t have a shower, I can’t have a bath,” Bella said.

“I can’t put (on) any sheets or anything on … even with a tissue, you can’t touch it with anything, otherwise I will scream.”

Her parents are also in a world of pain, unable to comfort their little girl.

“I just want to give her a big cuddle but I can’t because if I cuddle her, then it moves her and that hurts her,” her mum Emma Macey said.

Despite their best efforts, the family have not been able to find answers in Australia, meaning they have to turn to United States doctors for help.

Bella and her mother have faced a painful overseas trip to the US in order to receive treatment from the Spero Clinic.

Despite the welcome news that treatment could be available, the Macey family aren’t sure they can pay for it.

“We’ll sell out house if that’s what we need to do, there’s nothing we won’t do to make sure that she gets better,” her mother said.

Her mother has organised a GoFundMe campaign to help pay for her daughter’s treatment, with generous Australians raising around $190,000 of the $235,000 goal.