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 rated as the most painful condition on the McGill Pain Index, ranking higher than unmedicated childbirth.
Jazmin described the pain as if her ‘whole body is on fire’ with even seemingly small tasks, like moving a rug, causing extreme pain.
She regularly suffers from painful swelling, bruising, discoloration, fatigue, insomnia and is prone to dramatic temperature changes.
Jazmin Farr (pictured), 12, from Adelaide suffers from Complex Regional Pain Syndrome, the world’s most painful disease
Jazmin (pictured) described the pain from CRPS as feeling like her ‘whole body is on fire’, accompanied by painful swelling, bruising, discolouration, fatigue and insomnia
Her mother, Mandy Farr, told Daily Mail Australia that another injury has seen Jazmin’s condition drastically worsen.
“Jazmin’s CRPS spread rapidly last year after another injury, which triggered full body CRPS for her now,” she said.
‘Begging for this horrible pain to stop has been a constant line from Jazmin. There have been countless days when she physically and mentally can’t take it anymore.
‘It is clear to see how this terrible disease gets its nickname, the “suicide disease”.’
About 5,000 Australians suffer from CRPS, but there are limited treatment options 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.
Its approach has been very successful with a large number of patients going into remission.
Ms Farr believes the Spero Clinic may be ‘the only hope’ for Jazmin.
‘Day-to-day life with CRPS is extremely unpredictable. Even on a good day, pain is always present. The pain level literally changes from minute to minute, she said.
‘The Spero Clinic uses cutting-edge equipment and techniques to treat neurological conditions such as 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.’
CRPS is a neurological disorder rated as the most painful condition on the McGill Pain Index (pictured), ranking higher than unmedicated childbirth
Jazmin’s family is working to raise $200,000 for the 12-year-old to visit a specialty clinic in America, the Spero Clinic
But the high costs of temporarily moving to the US for therapy and attending the clinic have prevented Jazmin from seeking the life-changing treatment.
‘We have been collecting money for five and a half months. It’s been a lot of late nights and hard work to get to where we are,’ Ms Farr said.
‘Our GoFundMe the goal is $200,000 and we are currently at $136,400.
‘The funds will cover treatment, travel, accommodation, living expenses and any medical expenses that will be necessary.’
Mrs Farr said the generosity her family has received has ‘definitely blown us away in the best possible way’ but their greatest comfort has been each other.
‘The last four years have definitely been the hardest we’ve ever been through. It has been filled with great heartache and pain,” she said.
‘As a parent, sitting and watching your child suffer day after day is something no parent should ever have to endure.
‘Our bond as a family has only been strengthened, enabling us all to get through this.’
As soon as the family is able to raise $200,000, they will take the next available spot at the Spero Clinic and hopefully give Jazmin the childhood she deserves.
Jazmin (pictured) began suffering from CRPS four years ago after sustaining a foot injury while playing on a trampoline
Jazmin’s mother, Mandy Farr, said the disease has had a devastating effect on her family, saying “sitting and watching your child suffer day after day is something no parent should ever have to endure”
‘We have done several fundraisers and events to get donations. We have been humbled and blown away by the kindness and support we have received from people, said Ms Farr.
‘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 road means the world to not only Jazzy, but all of us as a family.’