Defying Rare Disease
Donation protected
Dear Angels , I am reaching out to seek your help in finding treatment and care options for my rare disease and chronic illnesses.
As you may know, finding a cure can be an extremely difficult and expensive process, and I am in desperate need of support.
I have been diagnosed with Durcum’s disease, and recently diagnosed with Mitochondrial disease, as well as several severe illnesses. Durcum’s disease only effects a small number of people worldwide. Durcum’s disease makes extremely painful tumours grow throughout my entire body. Unfortunately there is no cure for this condition and treatment options are limited.
I have been doing extensive research and I have come across promising new treatments and options that are being developed. However, these treatments are not covered by Medicare and the costs are beyond my financial means.
I am reaching out to you in the hopes that you can help me raise the necessary funds to pay for the these treatments. Any amount, no matter how small, would be greatly appreciated. I know that together, we can make a difference in the fight against rare disease.
Thank you for your consideration and support.
Sincerely, Marija Cairns.
Further information ℹ️ can be found below ⬇️
Hi everyone, My name is Marija, and I have a rare disease - as well as Parkinson’s disease and, several serious chronic illnesses, with seizures. Durcums Disease is one of the worlds top ten rarest diseases, and one of the most painful diseases known to mankind! 99.95% of Doctors have never ever heard of it before and there’s no cure! I have been trying to get treatment and help for over six years…I have been rejected by the NDIS - (National Disability Insurance Scheem) - because my disease is so rare that we don’t have a single specialist who knows about it or can treat it, and I, along with my family are being punished for having a rare disease and chronic illnesses. I am a single mother who has a child with autism - and I take care of my elderly mother as well. I love my children and my mother so very much and, I just want to be the best mother I can possibly be, and to spend precious time - quality time with my children and I cannot do that without your help and support - time is running out, and I desperately need your help!
The reason I cannot do all these things is because of my rare disease…as Durcums Disease causes tumours to grow all over my body, I cannot walk! I’m in constant pain, I am always dizzy, and have tremors and, I am completely bedridden and stuck on my left side and cannot move - they’ve let me go without treatment for so long that it has made me so sick that I cannot even sit anymore…they’re stolen precious time and moment from me and my family. I’ve spent so much time and money just to find a Doctor who would believe me, and who would take me seriously! In that time I have been abused mentally, emotionally, and even physically by the hospital staff and Doctors who we’re supposed to be taking care of me - instead, they treated me like no human being should ever be treated!!! Needless to say that those experiences have left me feeling fearful, sad, upset, angry, confused, and with PTSD!
I have been extremely patient and extremely kind in all this time - and they’ve taken advantage of my kindness and fear. I have tried everything on my own, quietly…I have tried contacting the health department and others, unfortunately I am being ignored. I have spent thousands of dollars trying to get help, and there’s only one specialist in the United States - I cannot afford treatments, and I have tried everything including going private but, that only put me in debt! Medicare only pays for so much, and that’s where at least partly the NDIS and other people and agencies are supposed to be there to provide support and care, but they aren’t doing their jobs, nor are they listening, and nor do they care about me or my family…
My local hospital(s) doesn’t have a multiple disciplinary team of Doctors who are supposed to be there to make a plan to help treat you…I don’t have access to any treatments or options for care, and I don’t know what to do?! I need your help!!!
My goal is mostly likely not enough to pay for everything I need, but it will go towards paying for surgeries, medications, Specialists and visits, travel to a hospital in Melbourne or Sydney - traveling costs, and hotel fees for hospital visits and stays with my family, and as the tumours grow back I will need continued medical treatments, and health care supports. I hope to raise enough funds to get to see the one specialist in America, and get treatment there that’s not available in Australia - also I need equipment for every day living - I rent some equipment, but I’d like to own my own health equipment that I cannot rent, and don’t have access to - equipment that can help provide me with the ability to be as independent as possible, for example - I need help with a communication device with cameras, as I cannot get up to open the door - I need a hospital bed to spend time with my family as I cannot sit... These are just a few of the things that I desperately need, and I cannot get there without your help and support.
You can do more if you cannot donate, you can still help…If you can tweet or write to the current minister for health - share this - subscribe - donate- share - anything that you can do to help me and my children is very much appreciated…without treatment I will die! I need your help and support, and prayers would be greatly appreciated!
Thank you very much for listening, I wish I didn’t have to do this, but I have no choice - I tried keeping things private, but unfortunately it seems that if things don’t go viral or something like that, then they don’t care and keep mistreating you…unless you go public and force people to do their jobs, or go around the system and push for changes!
I hope by me doing this, I can advocate for change and hope that no other family has to do this just to get help with their medical problems or any other problems they may have…it shouldn’t be this difficult to help a single mother get medical attention, or to be taken seriously! I hope by doing this I can help spread awareness, and help others so that this never happens to anyone ever again! Please help me raise awareness, protect the sick and injured, expose the wrongdoings and corruption, the cruel treatment of patients who are suffering in a system designed to reward inaction, and punish people who are suffering and in need of help and support that is promised, but never arrives!
Thank you very much, Marija & Family!
As you may know, finding a cure can be an extremely difficult and expensive process, and I am in desperate need of support.
I have been diagnosed with Durcum’s disease, and recently diagnosed with Mitochondrial disease, as well as several severe illnesses. Durcum’s disease only effects a small number of people worldwide. Durcum’s disease makes extremely painful tumours grow throughout my entire body. Unfortunately there is no cure for this condition and treatment options are limited.
I have been doing extensive research and I have come across promising new treatments and options that are being developed. However, these treatments are not covered by Medicare and the costs are beyond my financial means.
I am reaching out to you in the hopes that you can help me raise the necessary funds to pay for the these treatments. Any amount, no matter how small, would be greatly appreciated. I know that together, we can make a difference in the fight against rare disease.
Thank you for your consideration and support.
Sincerely, Marija Cairns.
Further information ℹ️ can be found below ⬇️
Hi everyone, My name is Marija, and I have a rare disease - as well as Parkinson’s disease and, several serious chronic illnesses, with seizures. Durcums Disease is one of the worlds top ten rarest diseases, and one of the most painful diseases known to mankind! 99.95% of Doctors have never ever heard of it before and there’s no cure! I have been trying to get treatment and help for over six years…I have been rejected by the NDIS - (National Disability Insurance Scheem) - because my disease is so rare that we don’t have a single specialist who knows about it or can treat it, and I, along with my family are being punished for having a rare disease and chronic illnesses. I am a single mother who has a child with autism - and I take care of my elderly mother as well. I love my children and my mother so very much and, I just want to be the best mother I can possibly be, and to spend precious time - quality time with my children and I cannot do that without your help and support - time is running out, and I desperately need your help!
The reason I cannot do all these things is because of my rare disease…as Durcums Disease causes tumours to grow all over my body, I cannot walk! I’m in constant pain, I am always dizzy, and have tremors and, I am completely bedridden and stuck on my left side and cannot move - they’ve let me go without treatment for so long that it has made me so sick that I cannot even sit anymore…they’re stolen precious time and moment from me and my family. I’ve spent so much time and money just to find a Doctor who would believe me, and who would take me seriously! In that time I have been abused mentally, emotionally, and even physically by the hospital staff and Doctors who we’re supposed to be taking care of me - instead, they treated me like no human being should ever be treated!!! Needless to say that those experiences have left me feeling fearful, sad, upset, angry, confused, and with PTSD!
I have been extremely patient and extremely kind in all this time - and they’ve taken advantage of my kindness and fear. I have tried everything on my own, quietly…I have tried contacting the health department and others, unfortunately I am being ignored. I have spent thousands of dollars trying to get help, and there’s only one specialist in the United States - I cannot afford treatments, and I have tried everything including going private but, that only put me in debt! Medicare only pays for so much, and that’s where at least partly the NDIS and other people and agencies are supposed to be there to provide support and care, but they aren’t doing their jobs, nor are they listening, and nor do they care about me or my family…
My local hospital(s) doesn’t have a multiple disciplinary team of Doctors who are supposed to be there to make a plan to help treat you…I don’t have access to any treatments or options for care, and I don’t know what to do?! I need your help!!!
My goal is mostly likely not enough to pay for everything I need, but it will go towards paying for surgeries, medications, Specialists and visits, travel to a hospital in Melbourne or Sydney - traveling costs, and hotel fees for hospital visits and stays with my family, and as the tumours grow back I will need continued medical treatments, and health care supports. I hope to raise enough funds to get to see the one specialist in America, and get treatment there that’s not available in Australia - also I need equipment for every day living - I rent some equipment, but I’d like to own my own health equipment that I cannot rent, and don’t have access to - equipment that can help provide me with the ability to be as independent as possible, for example - I need help with a communication device with cameras, as I cannot get up to open the door - I need a hospital bed to spend time with my family as I cannot sit... These are just a few of the things that I desperately need, and I cannot get there without your help and support.
You can do more if you cannot donate, you can still help…If you can tweet or write to the current minister for health - share this - subscribe - donate- share - anything that you can do to help me and my children is very much appreciated…without treatment I will die! I need your help and support, and prayers would be greatly appreciated!
Thank you very much for listening, I wish I didn’t have to do this, but I have no choice - I tried keeping things private, but unfortunately it seems that if things don’t go viral or something like that, then they don’t care and keep mistreating you…unless you go public and force people to do their jobs, or go around the system and push for changes!
I hope by me doing this, I can advocate for change and hope that no other family has to do this just to get help with their medical problems or any other problems they may have…it shouldn’t be this difficult to help a single mother get medical attention, or to be taken seriously! I hope by doing this I can help spread awareness, and help others so that this never happens to anyone ever again! Please help me raise awareness, protect the sick and injured, expose the wrongdoings and corruption, the cruel treatment of patients who are suffering in a system designed to reward inaction, and punish people who are suffering and in need of help and support that is promised, but never arrives!
Thank you very much, Marija & Family!
Organizer
Marija Cairns
Organizer
Dunlop ACT