Bella Macey scraped the cap off an old blister while on holiday with her family in Fiji in May — and the 10-year-old’s life has been hell ever since.
Speaking to FEMAIL, her mother Emma explained that the blister became inflamed after Bella went swimming.
Within days, she had developed Complex Regional Pain Syndrome (CRPS) in her right leg, the most painful medical condition known to man.
Now Bella’s whole limb is affected – a raindrop hitting her leg makes it feel like it’s being ripped apart.
“She describes it as stinging, burning, stinging, like lightning,” said the distraught mother.
Emma Casey and her family were vacationing in Fiji when her eldest daughter Bella burst a blister and their lives changed forever
The family had the time of their lives for the first few days – then everything ‘went to hell’
Australian doctors quickly diagnosed the condition when the family returned to Melbourne, but admitted that the treatment options available here were limited.
Emma went online and found a treatment center in the US.
She took a leave of absence from her corporate job and boarded a plane with her oldest daughter, leaving her husband Chris and youngest Olivia behind.
That was three weeks ago – and since then there has been some functional improvement in Bella’s right leg.
But she still can’t sleep if something is wrong with it and even traveling to the treatment center by car every day is difficult.
“We’ll go over a little bump in the road and the pain will be unbelievable, she’ll scream and cry,” Emma said.
The good news is that Bella now uses crutches instead of a wheelchair.
The bad news is that there is no change in the intensity of her pain.
The boy scraped the top of an old blister and soon after developed an infection
She then developed the most painful condition in the world – which spread to cover her entire right leg, from toes to her groin
‘She recently dropped the crutch on her leg during a session and we had to cancel all other treatments that day, she was crying in pain,’ Emma said.
“She feels exhausted and defeated and really misses the simple things.”
Emma expects to be in the US for 15 or 16 weeks, but won’t be home until her daughter is pain free.
‘We can’t go home, there is no treatment there. I need my daughter in remission. She can’t live like this,’ she said.
Pediatric cases of CRPS are more likely to remain in remission, giving the family hope.
But aside from her brave face, young Bella is terrified.
Bella’s pain went so far that she could no longer walk and was dependent on a wheelchair
Emma says her daughter is no longer the carefree, bubbly girl she used to be
“She’s seen the articles about this, she knows there’s no cure and she wonders what will happen if this treatment doesn’t work,” Emma said.
“The pain is worse than contractions or amputations. When this first happened, people thought she just had a sore foot. But it’s so much worse than that.’
The family was originally booked for their holiday in Fiji in March 2020, but called it quits when Covid-19 hit.
The May date seemed perfect as it coincided with Emma’s 40th birthday.
The loving parents knew it would be a holiday to remember for their two daughters, but couldn’t imagine why.
Bella has developed allergies since she was diagnosed with CRPS. Her mother hopes these will also be eliminated once the doctors get a handle on the brutal condition.
Emma wants to let other people with CRPS know that they are not alone.
“I’ve joined groups on Facebook and they’ve helped me a lot,” she said.
The exhausted mother can’t wait to get back home and have her family together.
Bella is being treated in the US due to a lack of relevant medical facilities in Australia
Something has returned to her leg, but the pain is still relentless
“We just need a week or so of fun family time. But no vacation – we won’t be brave enough to have one for a while.’
The Macey family has one Go fund me to support treatment costs, which can total more than $300,000.
“The cost of treatment depends on how long we’re here, what extras are beneficial and how she responds to everything,” Emma said.