In a video uploaded to Stella’s Gofundme, it tells her story of Complex Regional Pain Syndrome (CRPS) to help raise awareness of this terrible disease. Video / Libby Best
When Stella Artuso was injured playing sport at age 12, she thought the worst of it would be a sprained ankle.
But instead the injury would trigger a condition that left the Brisbane teen feeling like her "veins are on fire" almost five years later.
"I always felt like I was present in moments but I was separated by a barrier of pain," Stella told news.com.au. "I couldn't smile without faking."
Now Stella, 17, is seeking a cure to the complex regional pain syndrome (CRPS) she says "took away my childhood" at a medical clinical in the United States.
It's a last-ditch attempt to give Stella her life back – which is so far yielding incredible results for the teen. However, it's left the Artuso family more than A$90,000 out of pocket and counting.
"Just a sprained ankle"
Stella's life changed forever when she sprained her ankle while playing touch football with her friends.
"I just rolled my ankle and it never got better from there. The pain just kept getting worse and no doctors knew what was happening," Stella said.
Gastroparesis is a condition that affects the normal movement of muscles which move food through your digestive tract. Photo / Supplied
"The weird thing was that it just felt normal at the time – just a typical sprained ankle, didn't really think much of it.
"But then as time went on and people were telling me it should be getting better it just kept getting worse."
It took Stella and her family nearly three months to find out what was wrong with her ankle, during which time she began to struggle to walk on her injured foot.
"We went to a lot of doctors and we actually went to one orthopaedic surgeon – and I was 12 at the time, on crutches, couldn't weight bear or anything," she said.
"He spoke to my mum and said to her he thought I was attention-seeking or faking … [he] made me walk out of his office, it was traumatic."
When Stella was finally diagnosed with CRPS she was stunned, as not even her GP had heard of the condition.
"We had never heard of it, it was a massive shock to us," she said, "because you know when I [was told] the world's most painful condition, which was terrifying."
For her family the diagnosis and pain that followed was just as heartbreaking.
Stella undergoing treatment. Photo / GoFundMe
I think I will forever be traumatised by the memory of my little girl writhing in agony, unable to sleep, crying and begging me to make the pain stop," Stella's mum Marita Artuso told news.com.au.
"As a mother, it is instinctual to want to protect and make your child better but it was impossible to do this for Stella.
"I cried many silent tears as I held her and patted her until she fell asleep from exhaustion – only for the tortuous cycle to begin again the next day.
"Being powerless to protect your child from pain is a torture of a different type for parents of any child who is suffering."
Over the next few years Brisbane doctors did their best to treat Stella's condition but couldn't cure her CRPS.
The teen was prescribed heavy painkillers and underwent treatment with a physio and psychologist but none of it could cure the root cause of her CRPS.
"Basically it's a dysfunction of the central nervous system, so it causes all kinds of crazy symptoms like burning pain and then it will be ice cold," Stella said.
"Honestly for a long time it felt like my veins were on fire and then just out of control burning. It really took away my childhood, I couldn't really do anything — go to school, see my friends … it kind of destroys every aspect of your life."
Stella's CRPS began to worsen when it started affecting her stomach and she was diagnosed with severe gastroperesis.
Stella Artuso is in the United States undergoing treatment for her complex regional pain syndrome. Photo / Supplied
Gastroparesis is a condition that affects the normal movement of muscles which move food through your digestive tract, making it hard for Stella to keep food and water down except through a feeding tube.
The function in her leg where the sprained ankle had first occurred also deteriorated further and despondent, Stella said she didn't want to try to find new ways to treat her CRPS.
"Mum was always hopeful that I would get better, [but] I just said to her, 'look, we've just got to accept that this is my life and just learn to live with it'. I just said stop googling because it's really depressing and finding out stories that people don't get better, just terrible things."
But her reaction only prompted her to look even more online and "by fluke" she discovered the Spero Clinic.
"Straight away she knew that's where she needed to send me," Stella said.
"I feel like a completely different person"
Located in the US state of Arkansas, The Spero Clinic is run by Dr Katinka van de Merwe and offers a range of treatments designed to target the root cause of CRPS, billing itself as the only clinic of its kind in the world.
Patients from all over come to the clinic for programmes that typically last 12 weeks and includes stimulation of the vagus nerve using electric impulses, oxygen therapy, exercise and scar tissue treatment.
Stella first arrived for treatment in late November with her mother and she ranked her pain levels at a eight or nine out of 10.
Now three months later, her pain is only around a two or three out of 10.
"Honestly I feel like a completely different person, it's crazy, it feels so surreal," she said.
When the teen arrived at clinic, she needed to use a wheelchair or crutches but now is able to walk unaided and in shoes.
"Stella's therapists have literally brought her leg and foot back to life by restoring blood circulation, movement range and muscle strength," her mother said.
However, her treatment is taking longer than expected because she was so ill when she arrived and will need at least 16 weeks at the Spero Clinic.
"We originally hoped to complete treatment over a 10-week period but Stella was actually more sick than we realised," Artuso said.
"Blood tests at the clinic revealed that Stella had serious, long established bacterial and viral infections in her blood which were compromising her adrenal, lymphatic and immune systems.
"These complications impaired Stella's response to treatment for the first six weeks at the clinic.
"Consequently, we've had to extend the treatment programme and thus the original cost estimates have increased exponentially."
So far the Artuso family estimate they have spent around A$90,000 on treatment, accommodation, car hire, insurance and living expenses so that Stella can get better.
Making matters worse her father and Artuso's husband Tony Artuso was recently made redundant from his job of 16 years, something that has "knocked us emotionally and financially".
The family are now hoping for more support through Stella's GoFundMe page, which has so far raised $32,000.
"Any further assistance would be so gratefully accepted," Artuso said.
