Lama Al-Akhras was bracing for life in a wheelchair last week as her body struggled with a rare and fatal disease.

The 47-year-old single mother of one was diagnosed with the debilitating Pompe disease in 2012, a neuromuscular disorder that causes muscles to weaken. Since then her breathing  has become more shallow  and walking   is difficult.

But from September 1, Ms Al-Akhras will be offered life-saving treatment by the federal government after Health Minister Sussan Ley approved the drug Myozyme to be placed on the government's Life Saving Drugs Programme. 

"I am very grateful," Ms Al-Akhras said, crying. "I was anxious and had panic attacks and I was extremely worried about my son's wellbeing."

For more details, go to: http://www.smh.com.au/federal-politics/political-news/pompe-disease-sufferers-offered-lifesaving-drug--by-sussan-ley-20150726-gijunq