A LIFE SAVED
The journey of a young woman diagnosed with a rare, debilitating disease
Two years ago Ashlin Peaker went from a vibrant, engaging 20-year-old university student to someone who couldn’t find her way across campus.
“It was the beginning of mid-terms,” Ashlin recalls. “As I thought maybe I was just stressed out, mental overload, so I gave it a couple of weeks.”
By Halloween of 2016, things turned dire. That night would be a memorable one for her mother, Meredith MacNaughton. It was the night her daughter was admitted to Markham Stouffville Hospital (MSH) with undiagnosed — and terrifying — symptoms.
It all began a few weeks earlier, in late September. Ashlin was in her fourth year at the University of Waterloo, when she started to experience confusion, dizziness and numbness. “When I called my mom, I was calling her about the numbness and getting lost around campus, and my speech was going funny,” said Ashlin.
Meredith rushed her to the MSH emergency department (ED) where they ran test after test, including full blood work, a CT scan and even a lumbar puncture, but nothing was out of the ordinary. Meanwhile, Ashlin’s symptoms worsened. She started showing signs of psychosis and losing the ability to speak, slurring her words and saying things that didn’t make sense.
Despite the lack of a diagnosis, Meredith urged ED staff to have Ashlin admitted on that fateful Halloween day.
Within the first 72 hours of being hospitalized, Ashlin deteriorated rapidly, experiencing a code blue cardiac arrest, and she was transferred to the Intensive Care Unit (ICU) while her doctors continued to search for a diagnosis.
“She was tested for everything you can possibly think of under the sun,” said Meredith. And, after 12 excruciating days, Ashlin’s care team finally had a diagnosis.
Dr. David Kim had never seen a case like this, but Ashlin’s symptoms led him to believe she had Anti-NMDA Receptor Encephalitis, a rare neurological auto-immune disease often associated with non-cancerous tumours on the ovaries. The tests (done in an experimental lab at SickKids) came back positive — it was the first case ever diagnosed at MSH, which Dr. Kim attributes to the efforts of Ashlin’s entire care team.
“The body is producing antibodies against itself,” said Dr. Kim. “Your immune system is supposed to be protecting you, and normally it does a good job, [but in this case] it turns on itself by mistake.” He compares the body’s immune system to a country’s police or military: “If they’re corrupt, if there’s a sleeper agent, there’s chaos within the country.”
That’s what was happening in Ashlin’s brain and body. “The symptoms unfortunately can start insidiously and mimic a lot of more common conditions initially, so it’s usually misdiagnosed,” he said.
It may start with flu-like symptoms, which — as antibodies attack the brain — turn into cognitive problems and psychosis, hallucinations and delirium. The victim starts to lose motor abilities and speech, as receptors key for learning and memory are attacked. Since the brain is overstimulated, this leads to seizures, and eventually the victim goes into a comatose state.
“[The doctor] asked me to draw a clock — this is a typical test for a stroke victim or a brain injury victim. I was not able to do that. I couldn’t make a dollar out of quarters, I couldn’t tell him what day of the week it was,” she said.
This would be her last memory for roughly six months.
As Ashlin continued to deteriorate, Dr. Kim and the ICU team made the decision to have Ashlin air-lifted to a hospital downtown Toronto.
“The doctor [there] said she’s the rarest of the rare and the worst of the worst,” said Meredith. “We were told to prepare for Ashlin to not make it, that she’s not responding to any of the treatments.” The disease is often linked to a tumour in the ovaries, and though they couldn’t find any indication of a tumour, they removed her ovaries in a lastditch effort to save her life.
In less than 48 hours, Ashlin started to respond, and by December 13 she was stable enough to return to the ICU at MSH. She still had a long and painful road ahead of her. She was being fed through a tube, still having seizures, and had to relearn everything: “She was like an infant, she couldn’t walk, talk, eat, shower,” said Meredith.
Ashlin spent more than six months in hospital, close to half that in the ICU unit at MSH under the care of what Meredith describes as “the most incredible medical team who ultimately became a family to our own.” There were 85 MSH staff members — from nurses and therapists to social workers and support staff — who touched Ashlin’s life.
Though Ashlin was discharged from MSH on March 3, 2017, it took until March 2018 to be given a clean bill of health; she regained her memory in rehab shortly after leaving MSH. She’s now working as a supervisor at Tim Hortons and returning to university to study accounting so she can work alongside her mom, who has her own accounting practice.
Ashlin has no memory of her time at MSH, but she’s incredibly grateful to everyone there who helped her. In fact, she returned with her mother to thank everyone personally and present them with a picture she had drawn.
“They were incredible because they treated us like family,” said Meredith. “They always had a bed set up for me if I wanted to stay overnight. They were so accommodating to us, totally above and beyond what I would have ever expected.”
The silver lining in all of this? “If our story can help one person,” she said “it puts a purpose behind it.”