On Christmas Day, while most people to wrap the gifts and excited, I'm in the hospital, when the last approved dose of miracle cure to keep me in time alive.I'll 25, but the future is uncertain after. Without Eculizumab, it could be my last ever Christmas with my two beautiful daughters, Nadine, 14, and her 11 Anya
I just can not afford their own rescue medication. It will cost a staggering $ five hundred thousand a year, and earlier this month, I was advised that the Government will continue to support my treatment.I'm the only person in the world, to my unique combination of rare diseases, air conditioners are, the disease that nearly killed me in this year.Up in July last year, I was happy and healthy and working as an artist. Then I ran into a mysterious group of diseases, which at first puzzled the doctors. Almost overnight I became severely disabled - he could not walk, sit or feed themselves. I've got five months in the hospital for a few weeks to be fighting for life in intensive care. These air conditioners have caused material injury to the body, attacking multiple organs, including the brain, kidneys, liver, lungs, heart, and digestive system. I was so ill that my doctors think my body can handle more - I'm almost died.My family and friends refused to accept her and grabbed my last hope to put Eculizumab. He kept the damage the disease of the body and literally saved my life - but I have it every two weeks and pay them impossible.What is most worrying is that the four professionals treat for me to say that this drug is necessary, accommodation - without saying I could be permanent incapacity or death. If the Minister of Health Sussan Ley struck approved the request by my doctor for further treatment, I could concentrate on my two daughters that Mama. He cares about his life.To say I'm stressed out and worried is an understatement. My blood pressure soared. The stress is overwhelming, especially when trying to keep as still as possible the interests of their children. I can absolutely assure them, when they ask me if everything is fine. I can only say: 'I hope so.' And he just can not afford to lose this hope.I'm of my comfort zone - he says, the whole world, what my family went through a difficult last year. But this is my only opportunity, and I hope to hear enough people and important enough to take action, asks the Minister of Health continue to grant me access to the medication that keeps me alive. Therefore, it is a petition Change.org to ask the Minister to intervene in Ley, set him treatment. If enough people to sign - and so far, 36,000 have wonderful people - we can only assure her.Without this wonder drug is monitored on a daily basis. This means that I have to go any plans not to do with my family for a night or traveling interstate or overseas job. I will be a prisoner in his own house and on the edge, wondering if every little sign of abnormality means that the disease will return. All I'm left with is the ability to ask for help. It is hope.My and my greatest hope that I will one day be able to live without fear - how passionately I hope for them. Simple things such as helping children to homework. Laugh with your family. Continuation of my work as an artist. You're going on holiday. I only get to the stage where I could consider a more active role in a girl's school community - something I can not these last two years.Christmas is generally relaxed when together to celebrate with our family. This year, we are on the edge. I can not expect a continuation of the improvement in my health? Or we experience fear and uncertainty? The only thing my family and I want this Christmas is that they have a future.
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