Madison beats rare illness and wins Qld exam top honour
MADISON Schneider lay curled up in her bed in May last year, sweating through 40 degree fevers, and too nauseous to eat or drink.
Her skin was yellow, her eyes were road maps and she was withering away to skin and bone.
She was just days away from death.
Hers was a case that would stun doctors at Rockhampton Base and the Royal Brisbane Hospital and that would come to feature in the British Medical Journal.
Her mother Katrina reflected on "the hardest time" of her life, witnessing her baby girl go through hell and back with no answers from the multitudes of health professionals who saw her.
"She had multiple organ failure. She should've passed away."
Madison was a perfectly healthy 16-year-old RGS student, with no history of illness when she began to feel ill.
She had stopped eating, had nine days of 40-plus temps and had developed a rash.
"I rang the GP and they said to take her straight to the Base," Katrina said.
After doctors did blood tests, Katrina was shocked to learn that Maddison's liver function was failing and that her inflammation levels were high.
Madison's parents, desperate for answers, enacted Ryan's Rule, a three-step process that allows loved ones of patients to raise concerns if a patient's health condition is worsening or not improving.
It was when a fill-in doctor from Sri Lanka came up with a startling comparison that would mean the difference between life and death.
The doctor explained how 10 years ago he had treated a young girl with Kawasaki disease, which is normally present in children aged 3-5.
The treatment for the disease, IVIg (intravenous immunoglobulin), typically costs $10,000 per round, but thankfully the family's admission through the public system meant they didn't have to fork out the huge sum.
The treatment is sourced from donor blood which is then transferred into a substance and delivered via a drip.
"The treatment has to be administered within five days and we only had 24 hours to administer it," Katrina said.
"The doctor was liaising with Lady Cilento and Royal Brisbane and made the call on the Saturday to start treatment before she was flown to Brisbane. He saved her life.
"She wasn't stable that morning to fly out but flew out at 9pm."
By Sunday morning, Madison was struggling to breathe.
"She was filled with fluid and they had to drain fluid from her lungs because she couldn't breathe," Katrina said.
As her father drove down to join his family and Maddison's brother slept on the floor beside her bed, her mother asked the doctor an unbearable question.
"I asked whether she would make it. I asked if they could fix it and the doctor said it was in multiple organs now," Katrina said.
"We were a mess. By the time her father arrived she was unresponsive. It had gone to her brain.
"It was horrible. It was the worst time. Just awful."
Two days later, they tested Madison's heart and found an enzyme signalling an impending heart attack had been released into her blood.
"She was deteriorating. She was not getting any better and doctors were coming in at 11 and 12am at night and they didn't know what to do," Katrina said.
"She was put into intensive care. She was very ill and still to this day, we don't know the trigger."
Shortly after Madison arrived at Royal Children's Hospital in Brisbane, she became something of a spectacle amongst the hospital's medical professionals.
Flocks of university students and ear, nose and throat doctors would come into her room and "poke and prod her", curious about her condition.
"My hospital room felt like a cage and I felt like a caged animal," the now 17-year-old said.
"The doctors told them they won't ever see a case like this in Australia again so 'take a good look'.
"My mum told them to 'shoo' and give me space because I was drained and overwhelmed.
"She would tell me to focus on getting back to school to perform in the musical (Strictly Ballroom as Liz Holt).
"It was with support of my parents and the lovely messages from my friends that helped too. It gave me a boost and made me want to fight more."
When the disease reached Madison's brain, her personality and moods changed, and she found herself becoming aggressive and irritable.
She would lash out at those around her, telling her mother she "hated" her one second and that she loved her in the next.
"Mentally and emotionally, I didn't handle it well and multiple times I said to my mum 'just end it now, I can't do it any more'," she said.
"It hurt a lot, physically and mentally, going through it."
Four months later, Madison returned to Rockhampton and performed in Strictly Ballroom.
However, the long hours and physically demanding role took its toll on Madison's body and she returned to Brisbane for three weeks for another round of IVIg treatment.
"My lips swelled. My mum called them Kardashian lips, and my grades dropped from not being at school but school was lovely about it and so caring throughout the whole ordeal," she said.
Four months after coming home, Maddison's hair began to fall out rapidly and she had the decision to cut it off into a pixie cut.
"I had extremely long hair that I loved and when it began to fall out I didn't handle it well," she said.
"Mum got me caps and my prep teacher lent me a scarf but I didn't want to wear any of it. I didn't want the thought that I was going bald.
Now sporting a thicker, chic new bob and full of infectious positivity and charm, Madison's condition has continued to improve.
"Everything is going quite well. I'm very much on the mend," she said.
"I'm still meeting with immunologists and paediatricians to clarify things and make sure I'm on the right track but it's been good news as of late."
Madison is now preparing for her role in RGS' upcoming DMTA Beauty and the Beast musical, where she will play the role of Babette.
"I'm happy to be here. I'm happy to be alive."
Madison proved her talent and determination when she topped the state in the Grade 7 Australian Music Examinations Board drama and performance exam for 2018.
After returning from her second stint at Royal Brisbane Hospital, Madison had just three weeks to pull it all together before she sat the exam in November.
When she found out she had won, she was "so happy" she was in tears.
"When I got the news I was ecstatic. It was the best news," she said.
The examination involved a presentation of poetry, prose and drama, a culmination of 15 minutes worth of performance.
On June 8, Madison headed to parliament house in Brisbane where she accepted her award at the 73rd Barbara Sisley Awards.
She also performed one of her favourite poems Are we there yet?, by Michael Thompson.
Madison's speech and drama teacher of six years, Peta Horneman-Wren said she was very proud of Madison's huge achievement.
"She's done really well and was up against it obviously," Peta said.
"The illness impacted her preparation, but she certainly had the potential to do it."
- A relatively uncommon illness that mostly affects children under five. It can occur in older children, and very rarely in teenagers and adults.
- There are around 200-300 cases diagnosed in Australia per year.
- It occurs when vessels throughout the body become inflamed, including the coronary arteries in the heart. Kawasaki disease is collection of symptoms caused by vasculitis. The cause of the inflammation remains unknown.
- Symptoms include a rash, red, shiny or dry cracked lips, red lumpy tongue, swollen and red hands or feet, red bloodshot eyes, large, swollen glands in the neck, joint pain and extreme irritability.
- Kawasaki starts with a high fever that last five or more days.