Rebecca Atlas in confined to her home while struggling with auto-immune disorder limbic encephalopathy.
Rebecca Atlas in confined to her home while struggling with auto-immune disorder limbic encephalopathy. john mccutcheon

Brave mum ready to die but needs our help to survive

THERE'S a strong chance Rebecca Atlas will die or become permanently disabled, yet she is determined to put on a brave face for her young daughter.

Over the past 11 years, the 42-year-old Peregian Springs mum has endured the death of a baby, suffered through the breakdown of two relationships and battled cancer.

But August 2011 marked the beginning of what would become her toughest battle when she suddenly found she could not move her right foot and her toes were numb.

The symptoms soon spread to other parts of her body and Rebecca was diagnosed with auto-immune limbic encephalopathy. "I seemed to be deteriorating and getting worse very quickly," she said.

"I lost my ability to do really anything for myself.

"I lost my speech completely, my ability to open one eye at all, and the other one only a little bit.

"My body formed very strange postures I couldn't get out of and I lost my ability to walk, my ability to even sit up and converse."

But within two weeks of starting Intravenous Immunoglobulin (IVIG) treatment, things started to improve.

"My speech started to get better and my movements got better," Rebecca said.

"I got some of my personality back. They may be little things, but they're huge things to me."

While Rebecca may never know when or how she developed auto-immune limbic encephalopathy, she was told it could have stemmed from ovarian tumours she had when she was younger.

While her body was fighting that illness, it accidentally also "attacked" her brain.

In 2010, Rebecca had a hysterectomy because of more ovarian tumours.

"The advice of my doctors was to get rid of everything," she said.

"The treatment for me is lifesaving, to the point that it gives me enough to carry on, not having a normal life, but having some sort of life," she said.

The IVIG treatment costs $35,000 a day because it requires about 1000 plasma donations.

"There's a shortage of it (plasma) in Australia," Rebecca said.

While there is a 25% chance Rebecca could die or become permanently disabled, she said she's trying to be brave for her daughter, Giselle.

"Unlike cancer, there is no remission for me," she said.

"I'd like to get to a stage where I can sit through a movie with my daughter and be able to get a wheelchair in the car and go out.

"I don't have the ability to leave the house, so my days are confined mainly within my bedroom, because I fall over all the time, I can hurt myself.

"I have people looking after me... nurses, physios and speech therapists.

"You lose a lot of friends because you don't have the ability to be social and can't deal with more than one person speaking to me."


How to help

  • Plasma donation involves donating a concentrated collection of plasma only.
  • You can donate plasma every two weeks as your red cells are returned to you when you donate.
  • Blood type A, AB and B donors are particularly needed.

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