Bella Macey’s family plead for help for treatment after 10yo diagnosed with Complex Regional Pain Syndrome

A Melbourne girl’s life turned upside down after she got a blister on her foot from thongs. Now, she has a disease that makes even the lightest touch feel “excruciating”.

Bella Macey, 10, enjoying cooking before she was diagnosed with CRPS last month.

A Melbourne family is pleading for help to find a treatment for their young daughter who suffers from a rare and painful disease which makes even the lightest touch feel “excruciating”.

Bella Macey, 10, was diagnosed with Complex Regional Pain Syndrome after sustaining an innocuous blister on her foot while on an overseas beach holiday more than a month ago.

The once “vibrant and spirited” schoolgirl has been confined to her bed at the Royal Children’s Hospital ever since.

The little-known condition has no cure and nowhere in Australia offers treatment for the cause of the pain.

But the family hopes a specialist clinic in the United States could hold “the key to giving her back the life she deserves”.

Bella Macey, 10, receiving care in hospital.

Speaking with the Herald Sun on Sunday, mother Emma Macey said her family’s life was turned upside down in a matter of days.

“We went snorkelling one day and the next day we woke up, it was clear that something had gotten into the little wound, and she had an infection in it,” Ms Macey said.

After consulting with a clinic and receiving antibiotics, medical professionals said there would be improvement within 24 hours.

The next day, Bella’s foot had swollen up and the pain had increased dramatically, forcing the family to return home and check her into Austin Hospital in Heidelberg.

Within hours, a paediatrician had diagnosed Bella and determined she was suffering from CSPR.

Olivia Macey, 6, holding her sister Bella as she rests in her hospital bed at the Royal Children's Hospital.

The illness can be completely unprovoked but is typically triggered following an injury or wound to an extremity, most commonly on the arms or legs.

CSPR is a neurological function that interrupts the brain’s ability to gauge pain, even if an injury or physical impairment has healed.

“It’s a really cruel, cruel illness.”

“The pain is just immense.

“She can’t handle any touch, you couldn’t run a feather over her leg otherwise she would scream in excruciating pain,” she said.

Ms Macey said her daughter needs at least six hours of physical treatment a day to try to desensitise the pain and avoid becoming a chronic issue.

“To see your child like this, there’s nothing else that could be this awful and distressing and scary.”

For Emma, her husband Chris and their youngest daughter Olivia Macey, adapting to their new normal has been tough.

Bella Macey with her family days before her life turned upside down.

“We are positive that she’s going to fight this and that we are going to do whatever it takes to get her the treatment she needs,” she said.

“It’s just one of those unfortunate diseases where there is so much unknown.”

After consulting with pain specialists and speaking with families also affected by the illness, it was clear to Ms Macey that there was a lack of knowledge about the illness in Australia.

“We’ve spoken to other families that have been here [Royal Melbourne Children’s Hospital] and working with medical teams, no one really has a solution on how to treat the cause of the pain.”

In an effort to support her suffering daughter, Ms Macey has set up a GoFundMe page to fundraise travel to the US where she can receive specialist treatment.