The hit Netflix show shedding light on Aussie girl's 'gut-wrenching' condition
The show is very overwhelming for one Aussie family who are confronted with the daily struggles of their 11-year-old dealing with chronic pain 24 hours a day.
Sitting down to watch Netflix with her family, mum-of-two Amanda Farr found it "confronting". She had chosen a show that felt very close to home and it was "overwhelming".
Take Care of Maya tells the story of Maya Kowalski, an American girl who's suffered from Complex Regional Pain Syndrome (CRPS) since the age of nine. And while viewers would agree it's "very full on," it was like "looking in the mirror" for the South Australian whose 11-year-old daughter Jazmin is living with the "nightmare" condition.
"It was extremely difficult to watch, I had to stop it many times," the 40-year-old from Woodcroft in Adelaide told Yahoo News.
Ankle injury leads to debilitating CRPS diagnosis
Amanda could "relate to every single aspect in that story" because Jazmin had been diagnosed with the rare chronic pain condition in 2021, a year and a half after a seemingly normal ankle injury. Since then, the "kind-hearted little soul" has experienced unrelenting pain throughout her body which "feels like her bones are being crushed or stabbed with a knife".
"With CPRS, it can sometimes remain localised to one particular limb, but for Jazmin it’s everywhere," her mum said. "Since her diagnosis, [the pain] has just set off like a bushfire and is rapidly and aggressively making its way through her whole body".
'Every day just feels like you're surviving, not living'
There's little known about the neurological condition which sees around 5000 Australians diagnosed with it each year. It usually affects the hands, feet and limbs, but can spread throughout the body — like in Jazmin's case — and there's no treatment available.
The 11-year-old also experiences extreme fatigue and insomnia as the pain "doesn't rest when she does". It's "traumatising to watch," says mum Amanda, who's Jazmin's full-time carer.
"Sitting and watching your child in absolute agony 24 hours a day, and there's nothing that you can do to relieve that... it's very gut-wrenching to watch," she said, admitting she feels "helpless".
"There are restless nights of awaking and screaming and crying," she added. "Our life has definitely been flipped on its head from the day that this all started for Jazmin.
"Every day just feels like you're surviving, not living."
Lack of knowledge in Australia: 'Very challenging'
To date, Jazmin has been unable to find relief for her pain. "One of the biggest difficulties with CRPS is the lack of knowledge," Amanda said. "Many doctors and specialists have never even heard of this condition. It's very challenging and very isolating".
Now the family is looking into treatment at a "one of a kind" US clinic that specialises in CRPS. There is a "range of treatments available" at The Spero Clinic, but it comes with "substantial costs.
"Treatment itself is a 13-and-a-half week process and that's a bare minimum. Then on top of that, you've still got accommodation, flights and all associated medical treatments including equipment," Amanda explained.
"CRPS is very complex but there's a glimmer of hope if we get the treatment we need. It's our only option at the moment".
Family raising money for expensive overseas treatment
The family have set up a GoFundMe page to help cover some costs. "We just want our daughter to not be suffering in pain anymore," she said. "Her body can’t handle much more.
"I also want to be a voice and advocate for all the other families out there that are also suffering in silence like ourselves, and to create awareness. Families shouldn't have to travel overseas to seek treatment. We should have the same facilities within our own country".
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