Just the touch of clothing on her skin can make 10yo Bella scream in agony

If you've seen Netflix's Take Care of Maya, Bella suffers from the same debilitating and incurable condition. 

Emma Macey, 40, from Melbourne says her daughter Bella’s painful journey began with just a tiny little blister. 

It was caused by her thong rubbing against her foot on holiday overseas. Days later, Bella was crying uncontrollably in pain and no one could understand why.

“Doctors couldn’t tell us, but they suspected a bug got into her foot when the blister broke open while she was snorkelling,” mum Emma says.

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"We were told don't Google it"

A quick trip to the resort doctor and then the hospital couldn’t offer any clues as to what had happened. Bella was given medication, while doctors were scratching their heads looking for answers.

Four days after it all began, the family flew back to Australia and went straight to the hospital.

“Things got very scary very quickly and there was so much swelling and her foot was red,” says Emma. Doctors raced into action, calling the infectious diseases unit and Bella was put on four different kinds of strong antibiotics.

“We are just throwing everything, including the kitchen sink at it, was what they told me."

Emma and the rest of the family hadn’t slept in days, they were travel-weary and living on edge wondering what was going on.

At the hospital, they did a CT scan, and took bloods. Pain medication had no effect. Emma says they were trying to find out if some kind of infection had gotten into her bones. “At times poor Bella was just crying in pain, but then others, she was so heavily medicated on strong opioids she was really out of it,” says Emma.

“We were worried she might lose her leg to some really scary infection.”

But it turned out there was no infection, and all the other tests came back clear. Four days later, a paediatrician gave the family a diagnosis.

“We were told she had a rare disease called Complex Regional Pain Syndrome (CRPS) which is triggered by a small injury or a trauma,” says Emma.

CRPS affects a person’s neurological pathways. The brain is still receiving pain signals even though physically there is no sign of infection or cause for the pain.

Even with the diagnosis, Emma says it didn’t make it any easier for Bella. “It was really scary and confusing, when the doctor told us, he was giving us these really sympathetic looks and we didn’t understand why,” she says.

“Now we do. We were also told don’t Google it, you’ll freak out and find scary things, but when someone tells you that, what do you do?”

Image: Supplied

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She can't move, wear pants or shower without excruciating pain

Bella is unable to move, she can’t wear pants and even the touch of clothing against her skin can be agonising for her. In hospital, they had to create a tent over her leg, because just a sheet laying over her was incredibly painful.

Emma joined Facebook communities and she says that really helped to reach out to others who had been through similar experiences.

There is no cure for CRPS. Because Bella was diagnosed so young, Emma says she may have a better outcome than an adult with a new diagnosis.

They’ve tried painkillers and different types of pain management but nothing seems to work. After four weeks in hospital, Bella is now back home and surrounded by her family. She can’t see her friends or go to school as she is too unwell.

Even going to the toilet is painful for her. Showering is a huge ordeal. “If she has a shower, that’s her done for the day, she is completely wiped physically and emotionally and she is screaming,” says Emma. “And that’s not even the water touching her leg, it’s just the steam.”

Image: Supplied

"She is frightened and just wants it to all be over"

Bella is fighting her pain as best she can. She just wants to live her life, the life she had before this all began. “She is frightened and just wants it to all be over,” says Emma.

Bella’s younger sister Olivia, six, is finding it hard seeing her big sister in pain. The family have been trying to keep things as normal as possible for Olivia. “We live in an amazing community who have offered lots of support. People have been dropping meals off and checking in and taking Olivia for play dates,” she says.

Emma says Bella is a beautiful child with a big heart. “She’s really kind and loves helping others. She donates her easter eggs every year to the hospital for sick kids, she’s an incredible kid,” she says.

“We are a really tight family. I have learned through this that it’s ok to ask for help, I can’t do everything.”

“It’s bad enough when adults get CRPS, but when kids get it, it is just absolutely cruel,” she says.

Emma says there are few resources in Australia to help those with CRPS. Emma and Bella are now jetting off to the US to go to the Spero Clinic. Bella will take part in a multidisciplinary treatment geared to help those with CRPS.

The family have reached out to Go Fund Me for help.

Originally published as Just the touch of clothing on her skin can make 10yo Bella scream in agony