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.”
Her condition had worsened to the point that Ms Al-Akhras wasn’t sure how long she could continue walking.
“I actually did literally send an email three days ago to Muscular Dystrophy asking them to help me find a wheelchair because I didn’t know where to start,” she said.
Ms Ley will announce on Monday that the Abbott government will provide $40 million over five years to help treat the deadly disease.
“Pompe disease is a rare and severe medical condition, affecting only a very small number of Australians every year,” Ms Ley said.
“However, it is a very expensive treatment – costing several hundred thousand dollars – putting it out of reach for many Australians.”
Ms Ley said the approval for the drug had occurred after the tireless efforts by the Australian Pompe Association.
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