By ELLIANA SALTALAMACCHIA
A year ago Emma O’Kelly was 21 and happy, in her third year studying public health at Deakin University, and had a job at Boost Juice that she loved.
But one night last April she suddenly lost her vision and was rushed to hospital in extreme pain.
It was 10 months before she could go home.
Diagnosed with a rare autoimmune disease that was causing swelling to her brain and spine, Emma was left paralysed from the neck down, and was told by doctors that she might never walk again.
But Emma never gave up, and this Sunday she will take part in the Wings for Life World Run to raise money to help find a cure for spinal cord injuries.
• The Wings for Life World Run – a global race raising money for spinal cord research – will be held on Sunday, May 6. Donate to Team Emma here
“I can’t see him, where is he?”
In April 2017, Emma began suffering severe back pain and relentless headaches that only a dark room and a cold shower would temporarily relieve.
One doctor said it was migraines and another diagnosed a sinus infection, so she took the prescribed medication and carried on with life as normal, persevering through the pain.
But Emma’s symptoms continued to worsen, and April 27 her vision completely disappeared.
“My mum said my boyfriend Tony was here, and I was saying, ‘I can’t see him, where is he?’ That was when she called the ambulance.”
Emma was put in an isolation room in Maroondah Hospital where doctors thought she had contracted an infectious disease such as meningococcal.
But when she began experiencing seizures and intensifying pain in her spine, doctors sent her to intensive care at Box Hill Hospital, where she stayed for seven weeks.
She was put into an induced coma and on a ventilator, as she became unable to breathe on her own. She was paralysed from the neck down.
But what exactly was happening to Emma remained a mystery to doctors. Every possible explanation as to why a healthy young woman had become unable to walk, talk, and breathe so suddenly was being investigated.
Emma had countless MRIs, a brain biopsy and a spinal tap. Doctors ruled out everything from multiple sclerosis to brain cancer, but were still unable to diagnose Emma’s condition. Samples of her spinal fluid and blood were sent to Oxford in England for testing.
The results returned positive for an extremely rare autoimmune disease – one not yet definitively named – that only one other person in the world had been diagnosed with.
“Why would they let a dog into the hospital?”
As the days passed by in the intensive care ward, Emma was taken off sedation and slowly began to breathe for longer periods on her own. She also began to regain movement in her hands and arms, but remained paralysed from the waist down.
Improvements continued and Emma was eventually moved back onto the general ward after 44 days in intensive care, none of which she says she has clear memories of – except for one day.
“I remember my family telling me my dog was coming into ICU, and I remember thinking this is definitely a dream because why would they let a dog into the hospital?”
On July 27, after a month on the general ward at Box Hill and then another at the Angliss Hospital, Emma was moved to Caulfield Hospital to work with a team of health professionals specialising in spinal rehabilitation.
Her tiny section of a shared room in Ward C would become her home for the next seven months.
Emma began daily physiotherapy – one hour in the morning and one hour in the afternoon – with the goal of becoming independent in her wheelchair at home.
Doctors and physios prepared her for the worst, saying it was most likely she would not walk again. Emma said one physio told her she was the most deconditioned patient she had ever seen.
“They kept saying if you have a spinal cord injury, you make the most improvement in the first three months. It had been longer than that, so they didn’t think it was going to happen, but I had a tiny feeling it would.”
Emma’s physio sessions were broken up with visits from her family and friends, and lunch with Tony, who came every day she was in rehab to keep her company and her mind occupied.
It was during these lunches that slowly but surely, they would see movement return to Emma’s toes, and then to her feet, and eventually, in November, to her legs.
“Every day when Tony came for lunch we would just keep practicing trying to move my foot, and sometimes there would be a little twitch and we would get really excited,” Emma said.
“One day in late November, I finally kicked my leg and Tony was so shocked. He told me do it again, and I moved it again. Then the next day I could do a different movement – I was amazed at my legs!”
As Emma continued to show signs of movement, her physio increased to four hours a day. In January, Emma finally took her first steps – nine months after the night she became unwell.
“She said this was because of me”
This Sunday evening, Emma will take part in the Wings for Life World Run in her wheelchair – a race that begins at exactly the same time around the world to raise money for spinal cord research.
“I wanted to do Wings for Life because I’ve lived the life of a paralysed person, as well as met others who are paralysed and seen how much it affects their lives. When I first started walking it was an amazing feeling, so others should get the chance to feel that too,” Emma said.
Emma is now able to walk using crutches around the house and for short periods outside, and uses a wheelchair for longer amounts of time. Her goal is to keep practicing with no crutches.
“The doctors can’t say if I’ll definitely make a full recovery, but they say it’s looking good. They say most people stay at a point but I keep improving, so they don’t see why I should stop.”
Emma will go back to university next semester, hoping to get a job in the disability sector, and will start driving again soon.
“The support from everyone around me – my family, my friends and Tony – helped me through. They all believed I would walk again," she said.
“One nurse said to me that I’m not lucky, but I’m lucky in a way that I have learnt to appreciate life more.
“(The nurse) said one morning she was scrolling through her phone and thought to herself, ‘Why am I scrolling through my phone? I should appreciate life more’,” Emma said.
“She said this was because of me.”