Adelaide girl Jazmin Farr is fundraising to treat the world’s most painful disease, Complex Regional Pain Syndrome

A 12-year-old Adelaide girl battling the world’s most painful disease has spent almost six months raising money to fund her own treatment.

Jazmin Farr was just eight years old when a foot injury from playing on a trampoline triggered Complex Regional Pain Syndrome, also known as CRPS.

CRPS is a neurological disorder that is rated the most painful condition on the McGill Pain Index, placing higher than unmedicated childbirth.

Jazmin described the pain like her ‘whole body is on fire’ with even seemingly small tasks, like moving a blanket, causing extreme pain. 

She regularly suffers painful swelling, bruising, discolouration, fatigue, insomnia and is prone to dramatic temperature changes. 

Her mother, Mandy Farr, told Daily Mail Australia a second injury has seen Jazmin’s condition drastically worsen. 

‘Jazmin’s CRPS spread rapidly last year after another injury, setting off full-body CRPS for her now,’ she said. 

‘Begging for this horrific pain to stop has been a regular line from Jazmin. There have been countless days where she physically and mentally cannot tolerate it anymore.

‘It’s clear to see how this horrendous disease gets its nickname, the “suicide disease”.’

About 5,000 Australians suffer from CRPS but there are limited treatment options available and no known cure.

Only one facility in the world, the Spero Clinic in America, has successfully managed to treat the cause of CRPS through non-invasive therapy, rather than opting for pain management.

It’s approach has been very successful with a high number of patients entering remission.

Ms Farr believes the Spero Clinic could be ‘the only hope’ for Jazmin. 

‘Day-to-day life with CRPS is extremely unpredictable. Even on a good day pain is always present. Pain levels change, literally from minute to minute,’ she said.

‘The Spero Clinic uses cutting edge equipment and techniques to address neurological conditions, like CRPS.  

‘Unfortunately in Australia we have very little treatment available due to the lack of knowledge and recognition of CRPS.

‘Treatment options such as ketamine infusions, spinal blocks and stimulants are not exactly ideal therapies for anyone, let alone a 12-year-old child.’

However, the high cost of temporarily moving to the USA for therapy, as well as attending the clinic, have prevented Jazmin from seeking the life-changing treatment.

‘We have been fundraising for five-and-a-half months. It has been a lot of late nights and hard work to get to where we are at,’ Ms Farr said.

‘Our GoFundMe target is $200,000 and we’re currently at $136,400.

‘The funds will cover treatment, travel, accommodation, living away expenses and all medical costs that will be needed.’

Ms Farr said the generosity her family has received has ‘certainly knocked us off our feet, in the best way possible’ but their biggest comfort has been each other.

‘These past four years have definitely been the hardest thing we have ever had to go through. It has been filled with great heartache and pain,’ she said. 

‘As a parent to sit and watch your child suffer day after day is something that no parent should ever have to endure. 

‘Our bond as a family has only strengthened, enabling us all to be able to get through this.’

As soon as the family is able to raise $200,000 they will take the next available spot at Spero Clinic and, hopefully, give Jazmin the childhood she deserves. 

‘We have done numerous fundraisers and events to gain donations. We have been humbled and blown away by the kindness and support we have received from people,’ Ms Farr said.

‘People’s generosity, support and words of encouragement throughout this difficult time have all played a positive and powerful role. 

‘Knowing that we are no longer alone on this isolating pathway means the world to not only Jazzy, but all of us as a family.’