A pair of siblings with a rare hereditary condition that is destroying their bones reportedly will have to continue suffering and possibly face an early death after the Australian government ruled that it will not cover life-changing treatment.
Max and Mila Horder, 13 and 12 respectively, were diagnosed with lysosomal storage disease and told that a drug named Vimizim would have life-saving benefits, news.com.au reported. However, treatment costs up to $800,000 per person, and the Australian government’s Pharmaceutical Benefits Scheme (PBS) will not cover the costs.
“Without the drug, their bones will continue to disintegrate, their quality of life will diminish and they will continue to suffer in pain,” their mother, Luba Horder, told news.com.au. The Horders have two other boys who are not affected by the condition.
“I can’t breathe most of the time, I don’t know what I’m doing,” she told the news station. “I just want the drug for my children, that’s all I seek,” she said.
For now, friends have set up a fundraising page to help cover some costs of the medication, while others launched a petition asking the country’s federal health minister to intervene. The maker of the drug reportedly also applied for listing on a separate Life Saving Drugs Program, which is still under consideration by the government, News.com.au reported.
“I just want a chance to grow tall enough to go on the big girls’ rides at Luna Park,” Mila told news.com.au. “One day, I want to get married and have children of my own.”