‘Like Maya from the Netflix documentary, my daughter has CRPS. There is no known cure.’

Four weeks ago, 10-year-old Bella Macey was having the time of her life swimming and snorkelling on a family holiday in Fiji. The happy-go-lucky girl – who has a passion for judo, gymnastics and cooking – had a few blisters on her right foot from wearing thongs that her mum Emma was concerned about.

"The blisters turned into an open wound, which became red and infected with a tracking mark halfway up her calf," Emma tells Mamamia.

"We took her to the local medical clinic where she was given antibiotics and told she should see some improvement in 24 hours. But the next morning, Bella's foot had completely swollen up, and the pain had travelled to her knee. We went back to the medical clinic and staff put her on stronger antibiotics and again were told we should see improvements in another 24 hours." 

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But for Bella, things went from bad to worse. Emma explains that by day three, her leg showed no signs of improvement, and she could not tolerate any touch or movement.  

"By this stage, we had to borrow a wheelchair from the clinic to get her around. Trips to the toilet, or transferring her onto the bed, were traumatic for all of us, as Bella couldn't tolerate the pain. The next morning, things escalated as she was screaming in constant pain.

"We rushed her to another medical centre that was more like a tourist hospital and staff gave her different antibiotics intravenously. They asked us to come back the next morning for another dose before we were due to get on our flight back home. They gave her some morphine to help with the pain while getting ultrasounds done to check if we could fly home. The ultrasounds showed no signs of clotting and good blood flow, so thankfully we could get on the plane the next morning." 

Emma recalls the trip home to Australia with Bella, her husband Chris and her six-year-old daughter Olivia, was horrendous. An emergency medical team greeted the family at Brisbane Airport to review Bella and clear her for the final flight back to Melbourne. 

"We rushed Bella straight from Melbourne airport to the Austin Hospital where medical staff performed extensive tests to understand what was causing Bella such pain. After a few days at the Austin, no remaining signs of infection were apparent nor anything else from all the tests they had done. 

"This is when we received Bella's devastating diagnosis of Complex Regional Pain Syndrome (CRPS). The same condition that Maya Kowalski, the subject of the Netflix documentary Take Care of Maya, suffers from.

"We were shattered as we knew this was going to be a long journey to remission and that our lives were going to be changed forever." 

CRPS is a complex neurological disorder that causes severe, persistent pain, often triggered by minor injuries or surgeries. There's no known cure for CRPS but remission is possible. It has brought Bella's life to a standstill, leaving her unable to move, tolerate any touch or sensation to her affected leg and foot, attend school, play with friends, or even wear pants because the touch of the material is too much to bear.

Emma and Chris have been taking turns spending each day with Bella in the hospital while caring for Olivia and working out what to do next.  

"We have an incredible community around us who has been helping with meals, school drop-offs, pickups and playdates to keep Olivia's life as normal as possible. She also comes to the hospital to visit with Bella and we spend family time here in between meeting different specialists.

"Both of our workplaces have been extremely supportive, and I took a leave of absence to focus on looking after Bella along with the rest of the family. 

"I tried to return to work a couple of weeks ago and thought it might be good for me in a limited capacity to focus some attention away from the hospital, but after two days I broke down and realised how unrealistic that was. I realised this isn't something that I should distract myself from. This is real and takes a big toll on Bella and the rest of us." 

Bella in hospital. Image: Supplied.

Since their return from Fiji just four weeks ago, Emma says that Bella's pain hasn't improved. 

She has lost mobility in her right foot and leg, all the way up to her groin. She is now bedridden or in a wheelchair if she needs to get around. She has pain relief that allows her to be more comfortable when she is resting.  

"Some days are better than others, but no days are good," Emma says.

"Chris and I are incredibly emotional as it is so hard to see Bella in so much pain. We are doing our best to protect our own mental health by getting away from the hospital, but even when we aren't here, our minds are still busy thinking about the next steps to help Bella get better. Olivia knows Bella has a sore foot and leg, and she needs to get better, but doesn't understand all of what is going on." 

The Netflix documentary Take Care of Maya about Maya Kowalski and her family's devastating experience with CRPS coincidentally came out just a few weeks after Bella's diagnosis. 

"I knew nothing about CRPS until Bella's diagnosis and then watched the documentary a few days later. It was heartbreaking. Their story is not ours, but what it showed us is that we need to do something quickly, to avoid this spreading and causing more significant issues that can lead to lifelong chronic pain or having Bella be so medicated that we lose our little girl."  

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Unfortunately, there is no treatment available to Bella in Australia that will treat the cause of the pain. 

Emma and Chris are now hoping to raise enough money via a GoFundMe campaign to send Bella to the specialised Spero Clinic in the US that has credentials in providing remission for their patients.

"The Spero Clinic has treated patients from 50 US states and 34 countries around the world who have come to them seeking relief from their chronic, debilitating pain. Their Neurologic Rehabilitation Program typically lasts an average of 14 weeks. It is an intense program that includes blood work analysis, stimulation of the Vagus Nerve, oxygen therapy, neuromuscular re-education and scar tissue treatment, to name but a few.  

"Their goal is to remove nerve interference and restore balance to the central nervous system, so that your body may heal itself from within. We have connected with many other families who, like us, could not find intensive clinics specialised in CRPS and other neurological functional disorders, because we simply don't have the intensive rehab facilities that are specialised in these conditions here in Australia."

Bella. Image: Supplied.

Emma says that while they attempt to raise funds for Bella to go to the Spero clinic, they have found some comfort in getting to know other CRPS families and staying hopeful that Bella will one day go into full remission.

"We have connected with many other families here in Australia and overseas through Facebook communities. These people have been our lifeline. They understand it, they know how hard it is and they have also given us so much hope.

"We hope Bella goes into full remission with no future flare-ups. We know that this is possible given Bella's age and early diagnosis. 

"It is so important we treat this quickly, as the longer the disease is in her body, the harder it is to make a full recovery."

Emma and Chris have set up a GoFundMe campaign to help raise the funds necessary to get Bella to the Spero Clinic and provide her with the specialised treatment she urgently requires. The funds will go directly toward medical expenses, including consultations, diagnostic tests, treatments, medications, and any associated travel costs. 

Laura Jackel is Mamamia's Family Writer. For links to her articles and to see photos of her outfits and kids, follow her on Instagram and TikTok.

Feature Image: Supplied.