Emma Macey can safely say 2023 was the worst year of her family’s lives – and it all started with a simple blister.
“We were celebrating my 40th in Fiji last June,” says Emma, who’s a mum to Bella, 10, and seven-year-old Olivia.
“Bella got a blister from her sandals, which opened up. That’s where the infection got in. Within hours, her foot was so swollen, she couldn’t walk on it. Antibiotics weren’t working and she had this extreme sensitivity to touch, screaming in pain when anything brushed it.”
After three days of antibiotics and morphine, which didn’t dull Bella’s searing pain, Emma and her husband, Chris, 45, were able to get a flight home to Australia.
“It was awful,” recalls Emma. “It was impossible for Bella to get comfortable. She was crying and screaming. I’ve never seen anything like it and by the time we got to Melbourne, we were really scared.”
A few days later, at their local hospital, where opioid drugs failed to make a dent in Bella’s pain, a doctor gave Emma and Chris his diagnosis – complex regional pain syndrome (CRPS).
“The doctors all had sympathetic eyes and one told us not to google it because it would frighten us,” says Emma.
CRPS can improve over time and even go into remission, but in severe cases, like Bella’s, it can spread.
“Bella was getting worse,” remembers Ella. “She was in so much pain, we couldn’t move her and even pulling down her pants was excruciating.”
It was such a difference from the happy, active little girl who’d bounced around doing gymnastics and jujitsu, and who loved swimming and playing with her friends and little sister, just a month before.
But instead of falling apart, Emma and Chris, who work in advertising and real estate, set to work finding solutions.
They discovered the Spero Clinic in the US, which deals specifically with CRPS. It recognises the condition as one affecting the whole body and treats it as such, with every system checked and rebuilt.
“We had to act quickly,” says Emma. “It was going to cost thousands, so I set up a GoFundMe [crowd-funding page] and the response was just incredible.”
To date, they have raised more than $300,000 and, on 4 July 2023, a month after Bella’s diagnosis, she and Emma flew to the States.
“That flight was horrific and the first week there, she was asking us to cut off her leg to make the pain stop,” tells Emma. “I can’t even explain how awful it was.”
But six weeks after arriving at Spero, things started to change. Treatments designed to calm the central nervous system and stimulate the vagus nerve, including intense hypnotherapy and ionic therapy, were helping.
“Bella could bend her knee without pain, and eventually touch her leg and foot,” says Emma. “It meant she could walk with crutches, have a shower and sleep without horrendous pain.”
Road to recovery
In October, Bella was able to return home and continue treatment there. The day they touched down, Bella announced she wanted to return to school.
“We started with three times a week,” tells Emma. “She has so many medical appointments and she’s still very tired. Her pain has gone, except when she tries to move her ankle.”
Bella can’t walk without crutches, but Emma says she’s back to her normal self and gets on with the two or three hours of daily therapy.
“We have so much to be thankful for,” she shares. “We’ve been very lucky to have the opportunity to get to the Spero Clinic. There’s nothing like it in Australasia, and I’m hoping Bella’s case highlights the need for more research and funding for more intensive and holistic treatments.”
Bella still has a long way to go, but she’s determined to get back to her old life.
“All of the therapies have been really hard, but I know I have to keep doing them to get better,” says the determined little girl.
“What keeps me motivated to keep pushing through is knowing how many people are behind me. I’m looking forward to getting back to all of the activities I used to love and being able to do my next grading for jujitsu.”
What is CRPS?
Also known as the “suicide disease”, CRPS is the world’s most painful incurable condition, rating higher on the McGill Pain Index than childbirth or the amputation of a finger without anaesthetic.
Not much is known about CRPS, but it can occur following an injury or medical trauma and is thought to be a neurological disturbance that interrupts the brain’s ability to gauge pain.
For more info or support, visit kiwicrps.co.nz.
