Please help me so I can get medication to eat food.

Hello,

I was diagnosed with Hereditary Fructose Intolerance (HFI), a rare and potentially life-threatening genetic condition that affects my ability to digest fructose (man-made and natural sugar). HFI is caused by a deficiency in the enzyme aldolase B, which is responsible for breaking down fructose in the liver. This leads to an accumulation of fructose-1-phosphate, causing various debilitating symptoms such as brain fog, back pain, depression, abdominal pain, vomiting, hypoglycaemia, and potential liver, kidney damage, coma or death. These symptoms, combined with the physical effects of HFI, make it incredibly challenging for me to lead a normal life.

I've been experiencing symptoms of HFI my entire life but I faced severe complications starting in 2007. By 2012, my condition worsened, and in 2014, I could not eat, lost 14 kgs, and was admitted to hospital. Currently, I'm pregnant, which poses additional risks for both me and my unborn child, including maternal and fetal distress, preterm labor, and intrauterine growth restriction. After being diagnosed with HFI, I discovered the combination of xylose isomerase and alpha-galactosidase in pill form, which has allowed me to eat normally and manage my condition, significantly improving my quality of life.

At this point the enzymes, xylose isomerase, and alpha-galactosidase have not been considered for funding by Pharmac and Work and Income disability allowance won't help me either as it costs $262 a fortnight.