The desperate family of a girl who has been diagnosed with the world’s most painful condition, which she calls ‘the great evil’, is pleading for help to afford treatment.
Jazmin Farr, 11, has suffered from Complex Regional Pain Syndrome (CRPS) since she broke her foot jumping from a trampoline in Adelaide three years ago.
CRPS is a rare neurological disorder which is rated as the most painful condition on the McGill Pain Index, even higher than unmedicated child birth.
There is no cure for CRPS but the disease can go into remission with the help of some treatments.
Jazmin’s CRPS has caused her non-stop horrific pain for several years with the 11-year-old often left ‘begging’ for her suffering to end.
Her devastated mother, Amanda, detailed how the condition has destroyed the little girl’s life in a GoFundMe post.
‘It was four days before Jazmin’s eighth birthday that our world was turned upside down,’ she wrote.
‘It was a year-and-a-half before she was finally and officially diagnosed with CRPS.
‘We thought this would bring us answers, treatment and finally an end to our daughter’s suffering. We were very wrong.’
Jazmin and her family had never heard of CRPS and, to their dismay, neither had many of their doctors.
Due to the complex nature of the disease, the best most doctors have been able to offer Jazmin is strong pain medication to help her get through the day.
She hasn’t been able to attend school in person for years and instead spends most of time confined to her Adelaide home.
‘Jazmin suffers daily from excruciating pain. Mobility in her left ankle and leg has been effected and she feels unbearable pain all the way to the top of her head,’ Mrs Farr said.
‘She is on intense medication daily, none of which relieve the pain that she suffers.
‘Daily tasks, like having a shower, are intolerable and bring her to tears.
‘Just the lightest touch from the water makes her skin feel like someone is pouring a bucket of pins all over her body.’
Jazmin compared the pain to her ‘bones being crushed or stabbed with a knife’.
She regularly suffers painful swelling, bruising, discolouration, fatigue, insomnia and is prone to dramatic temperature changes.
‘Jazmin’s pain has aggressively become worse as her CRPS becomes more advanced and makes it’s way through her fragile body,’ Mrs Farr said.
‘We have watched our happy, vibrant and active little girl be robbed of her childhood and deteriorate as she suffers daily from excruciating pain.
‘As a parent, to sit and watch our child in agonizing pain is utterly gut wrenching and absolutely soul destroying.
‘To feel like your hands are tied as you helplessly sit by and watch and have no medical help to support you.
‘It is something that changes you, something that chips away at your heart and at your very existence.’
Mrs. Farr described the 11-year-old’s everyday life as a ‘battle with her body’.
‘She constantly begs for her pain to stop, she helplessly pleas with her own body as it becomes intolerable,’ she said.
‘Exhaustion is a regular part of Jazmin’s days, as the pain takes over her body can’t handle much more. She is overwhelmed with pain and trying to cope.
‘She refers to CRPS as “the great evil”. Jazmin writes, “A dark wave of sadness or even anger, frustration and confusion covers my mind and makes my heart feel sad”.
‘Our beautiful girl has lost her spark and that once strong spirit of hers, is now barely a flicker on a burning candle.’
However, there’s still one piece of hope Jazmin is holding onto.
The Spero Clinic is the only facility in the world trying 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.
‘We believe that this is our only hope to help Jazmin and to give her a chance at a life she deserves,’ Mrs Farr said.
Unfortunately, the clinic is in the United States.
Mrs. Farr told Daily Mail Australia her family has been in a whirlwind trying to organize a way for Jazmin to visit the center but the cost is too high.
‘This is something far beyond our means which is why we are reaching out and asking for people to open their hearts and help us achieve this dream for Jazzy,’ she said.
‘This is a chance for Jazmin to be able to live a better quality of life. We have been through three-and-a-half years of pure hell from this disease.
‘We have tried every possible avenue. Going to Spero Clinic, where they actually specialise in the treatment of CRPS, is our last glimpse of hope to finally put an end to our daughter’s suffering.’
Treatment at Spero Clinic is a minimum of 13 weeks but individual cases greatly differ and Jaz could be there a lot longer.
Mrs. Farr said she is doing everything she can to try and get her daughter help.
‘We need to get Jaz over there as soon as possible due to her CRPS rapidly spreading through her body,’ she said.
‘As soon as we can raise enough funds to support this endeavor and secure a placement at Spero Clinic, we will be there.
‘I am racing around as we speak to get passports and medical visa applications processed to be ready to go.’
So far more than $10,000 has been raised to help Jazmin receive the life-changing treatment. Mrs. Farr said her family is grateful for every cent.
‘No child should have to live a life that is constantly full of pain,’ she said.
‘To hear the sound of laughter echo through out the walls of our home rather than screams of pain should not be something we just dream of, it should be our reality.’
To donate or read more about Jaz’s story, visit her GoFundMe page.