Help Me Save My Husband and My Home
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On January 21st 2017 our lives changed forever. My husband Peter was rushed to hospital failing to walk or talk, suffering pain throughout his entire body.
After enduring 7 long weeks in 2 hospitals and 7 different specialist wards, he underwent countless scans, biopsies, infusions and drugs, finally establishing, the diagnosis of a rare double auto immune disease called Sarcoid like Myositis. Already diagnosed with lupus, fibromyalgia, haemachromatosis and bipolar, the auto-immune disease diagnosis result has left Peter and my family in a catastrophic situation.
Sarcoid like Myositis is an incurable and debilitating, rare, double auto-immune disease. Myositis alone, presents itself in the form of inflammation of the muscle tissue, which the body's immune system is attacking and destroying the muscle cells. The mere presence of inflammation causes weakness, which initially, being a tiler by trade, the disease went unidentified for months leading up to his total immobility and race to the hospital. Muscles such as the heart, lungs, swallowing, hands, fingers and lower legs (causing foot drop) were highly affected in Peter's case resulting in total inability to work. His extreme case included his vital muscles, the heart and lungs, ensuring his condition to be fatal. Sarcoidosis is the abnormal collections of inflammatory cells which form lumps, known as granulomas. With the disease beginning in the lungs, skin and lymph nodes, followed up with all organs potentially being affected, Peter was covered in a rash with extreme bruising and blood clottting under his skin. He suffered with shortness of breath, wheezing and chest pain. The rare, double auto-immune disease left Peter and our family frightened for his life, fighting the unknown and undetected disease prior to diagnosis.
9 months later we have exhausted all our savings, superannuation funds and none of our insurances have covered us, due to rare illness clauses in our policies fine print. Centrelink refused Disability Payments, even though Peter can NEVER work again as rare illness and experimental drugs did not tick the appropriate boxes for our application. Medical Certificates from over 6 doctors, specialists, GP's and psychiatrists did not count either, exhausting all ability to stay afloat. Our only chance to keep our home and pay the bills was to house students which just provides enough to scrape by. Our lives have turned into chaos from 5am in the morning to 9pm at night, we take care of 2 Japanese tennis students amid countless specialist appointments throughout the days. However, this brief income is only just enough to keep the banks off our backs and selling our home is the inevitable in the New Year which will leave us homeless and unable to house students for income.
We are currently on our last experimental drug which causes liver and renal failure and his fatigue keeps him in bed most days. We attend weekly specialist outpatient appointments along with further Petscans and Bone densomitry scans as the meds are eating his organs and weakening his bones.
Prognosis is terminal.
His medications (12) different ones keep giving him various side effects and make him feel sick constantly. With no answer in sight, we are asking for some help for us to keep our home as we would have no where to go.
We are hoping for a review with Disability which can take up to 6-8 months on appeal. Then the tribunal, but in the meantime our situation is URGENT!
I don't have any gruesome pictures as whilst they were trying to diagnose Peter we were all so distraught we did not think to photograph his situation.
We have tried to keep this as private as possible, for as long as possible, but, have now reached our whits end.
PLEASE HELP US
It will take a miracle to overcome this, with no posssibity of survival and a sure, painful death, we pray that the loving and generous people in our community can find it in their hearts to help us make it through.
After enduring 7 long weeks in 2 hospitals and 7 different specialist wards, he underwent countless scans, biopsies, infusions and drugs, finally establishing, the diagnosis of a rare double auto immune disease called Sarcoid like Myositis. Already diagnosed with lupus, fibromyalgia, haemachromatosis and bipolar, the auto-immune disease diagnosis result has left Peter and my family in a catastrophic situation.
Sarcoid like Myositis is an incurable and debilitating, rare, double auto-immune disease. Myositis alone, presents itself in the form of inflammation of the muscle tissue, which the body's immune system is attacking and destroying the muscle cells. The mere presence of inflammation causes weakness, which initially, being a tiler by trade, the disease went unidentified for months leading up to his total immobility and race to the hospital. Muscles such as the heart, lungs, swallowing, hands, fingers and lower legs (causing foot drop) were highly affected in Peter's case resulting in total inability to work. His extreme case included his vital muscles, the heart and lungs, ensuring his condition to be fatal. Sarcoidosis is the abnormal collections of inflammatory cells which form lumps, known as granulomas. With the disease beginning in the lungs, skin and lymph nodes, followed up with all organs potentially being affected, Peter was covered in a rash with extreme bruising and blood clottting under his skin. He suffered with shortness of breath, wheezing and chest pain. The rare, double auto-immune disease left Peter and our family frightened for his life, fighting the unknown and undetected disease prior to diagnosis.
9 months later we have exhausted all our savings, superannuation funds and none of our insurances have covered us, due to rare illness clauses in our policies fine print. Centrelink refused Disability Payments, even though Peter can NEVER work again as rare illness and experimental drugs did not tick the appropriate boxes for our application. Medical Certificates from over 6 doctors, specialists, GP's and psychiatrists did not count either, exhausting all ability to stay afloat. Our only chance to keep our home and pay the bills was to house students which just provides enough to scrape by. Our lives have turned into chaos from 5am in the morning to 9pm at night, we take care of 2 Japanese tennis students amid countless specialist appointments throughout the days. However, this brief income is only just enough to keep the banks off our backs and selling our home is the inevitable in the New Year which will leave us homeless and unable to house students for income.
We are currently on our last experimental drug which causes liver and renal failure and his fatigue keeps him in bed most days. We attend weekly specialist outpatient appointments along with further Petscans and Bone densomitry scans as the meds are eating his organs and weakening his bones.
Prognosis is terminal.
His medications (12) different ones keep giving him various side effects and make him feel sick constantly. With no answer in sight, we are asking for some help for us to keep our home as we would have no where to go.
We are hoping for a review with Disability which can take up to 6-8 months on appeal. Then the tribunal, but in the meantime our situation is URGENT!
I don't have any gruesome pictures as whilst they were trying to diagnose Peter we were all so distraught we did not think to photograph his situation.
We have tried to keep this as private as possible, for as long as possible, but, have now reached our whits end.
PLEASE HELP US
It will take a miracle to overcome this, with no posssibity of survival and a sure, painful death, we pray that the loving and generous people in our community can find it in their hearts to help us make it through.
Organizer
Robyne Smith
Organizer
Bundall QLD
