WATERLOO REGION - For nearly 18 months, Susan Benedetto has said precious little and hasn't taken a step.

The 48-year-old St. Mary's High School teacher can't speak or walk, and she's fed through a tube.

It's been like this since May 2012. For Susan's family, her husband Anthony and their children, Nicholas, 12, and nine-year-old Catherine, it's painful to watch their wife and mother immobilized by a mystery illness that doctors are struggling to diagnose.

Catherine often colours with her mom in her hospital bed. Susan chooses the colours and Catherine draws. Since the tubes have been removed, Catherine is no longer scared of her mom and freely kisses and hugs her.

Susan nods and shakes her head to communicate. In a year and a half, she has said a couple of words: hi and mom. Her elderly parents who live in Hamilton visit her at least twice a week in Toronto Western Hospital.

Susan has been home a few times for Christmas, Easter and a retirement party for a teacher friend.

Anthony, who's on a leave of absence from his job as a credit counsellor, drives to his wife's Toronto hospital bed every other day, while trying to maintain a household and a sense of normalcy for the children whose home has been turned upside down.

"It's extremely difficult to keep it together. There are so many battles to fight," he said. "It's a constant roller-coaster ride."

"They see me crying and it breaks my heart. I try to connect with them and explain why I'm crying," Anthony said.

The closest Susan got to a diagnosis is autoimmune encephalitis, also known as inflammation of the brain. Susan had a pre-existing autoimmune disorder, but was able to manage the symptoms for 20 years, her husband said.

Susan moved to Toronto Western Hospital on July 25 after spending about a year at Grand River Hospital in Kitchener. At one point, she was a patient at Hamilton General Hospital where she was in a coma for 10 days.

But now in Toronto, medical professionals say there is little left to be done to improve Susan's condition. Later this week, Susan will go to the Bickle Centre at Toronto Rehab in their complex continuing care unit.

Dr. Alfonso Fasano, a neurologist at Toronto Western and an associate professor at the University of Toronto, said the encephalitis of the brain is likely caused by a virus.

Fasano said Susan had two MRIs. The first MRI showed a huge lesion around the brain stem and severe inflammation. The second MRI done since Susan has been at the Toronto hospital now shows atrophy, which is death of neurons in the brain, he said.

The inflammation is no longer present, Fasano said.

Various treatments, including blood plasma exchange, were conducted when she came to Toronto, but "unfortunately she didn't recover," he said.

Fasano said the next step is moving out of the acute care unit at Toronto Western and going to a continuing care unit.

"We cannot say what is next in terms of symptoms. We can't say if she is going to be like this forever," he said.

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Fasano said the medication and treatment Susan has been on to deal with her autoimmune illness over the years may have contributed to the imbalance in the autoimmune system and lead to the abnormal reaction to the virus.

"Neurology is a new science. Neurology is a difficult part of medicine," he said.

Fasano understands that Susan's illness must be troubling for the family.

"I understand the point of view of the husband and he is trying whatever he can," he said. "Everybody at this hospital and other hospitals has tried to do our best."

At one point, Anthony considered taking his wife to the Mayo Clinic in Minnesota but gave up after he would have to keep her in a nearby hotel, mince her meals and hire a personal support worker to accompany him because the clinic would only see her as an outpatient.

When she arrived at Toronto Western, she had eight treatments of blood plasma exchange in which the plasma in her blood is separated out and replaced with new plasma.

For Anthony, who has watched his wife closely since she became ill, he noticed slight improvements such as different eye movements, increased facial expressions and a loosening of her clenched fists.

Anthony said she brings her hand to her nose to rub it, a frequent action she used to do before she became ill.

"When Nicolas saw her do this, he got so excited," said Anthony.

As a teacher, Susan qualifies for long-term disability and her salary is keeping the family afloat.

Anthony said he cashed some RRSP's and friends have raised funds for the family, including a friend of Susan who ran a marathon and collected $2,700.

"People are still there, but it's so hard for people to keep fighting with you," he said. "They have lives and I get it."