Tracey's Ultra Rare Disease Battle

I have an ultra rare blood disease called aHUS - atypical Haemolytic Uraemic Syndrome. It's a highly rare blood disorder.

I have rewritten this this as I wrote it when I was really unwell and it sounded a bit rambled and unstructured. And I want to make it clear that this is for medical expenses only.

I am currently having my 4th aHUS flare. This devastating blood disease has now completely shut down my kidneys. Until recently, my life was normal. I could do whatever I liked, whenever, loved my job and loved being home with my animals. I wasn't sick.. And then aHUS happened.

Suddenly my life as I knew it has been ripped out from beneath me. All of a sudden I have a permcath (access lines) in my chest and I am having dialysis 3 times a week, blood transfusions, injections and also an infusion of a life saving drug - all to try and switch off the disease and save my life. This is the 4th time aHUS has happened. The Doctors don't know if my kidneys will work again after this flare, if they don't start working soon, I am looking at permanent dialysis and then a kidney transplant.

It's a nightmare. Life is so different and harder right now.

I am reaching out for your support. Again. Years ago I had a flare in 2012 and 2013, I was thousands in out of pocket expenses. This burden was lifted a little by a previous gofundme account back then. All the money was used on medical expenses only. I still paid for expenses from my own pocket as well. My personal goal at that time was upgrading my car due to the 12hrs a week travel from Roma to Bri sbane and back then,  it was a dream I had that kept me focused on getting better. My new personal goal and dream are to build a little cabin on my block - again it's a personal dream and not linked to gofundme. This is to help with the medical.

I am so used to doing everything alone and independently, but honestly I need help. I live alone and support myself.

I live alone on small acreage in a shed. The shed is unlined, so it is just corrugated iron. I have a generator and little solar panel for power. I use a portable gas cooker to heat my water for showers and to cook food. I have no fridge as I don't have the right power to keep one going. I was really hoping one day to save enough to get a couple of little high set cabins on the block - one as the bedroom with a ensuite toilet/shower, the other as the kitchen/dining (cabin kits galore Brisbane make them and install them in 2-3 days about $15-$20000 each lock up). I wanted to install a wood stove and wood heater into the cabins as well as a proper solar power and septic system. That is an extra $10-$15000 . Let me make it clear that the cabins are a personal goal for me to achieve - I always set goals in life, it inspires me and gives me hope.

When I go home from hospital I will not only be worrying about how I can still do this, but my out of pocket expenses. Once again, the cabins are a personal goal, not go fund me. 

I need a hand up. My medical expenses are my absolute priority. If at all I do have anything at all left over it will at least go towards trying to get some sort of proper septic system and shower set up to increase hygiene, especially as I am now immuno-suppressed from the life saving drug I need to take. At the moment back home I have a portaloo and my shower is by way of putting heated water into a bucket and using a rechargeable hand held shower that sits in the bucket. I just need things to be a little easier for me at home.

Medical expenses will have to come first.

Every time my life starts to get on track, I am struck down by this disease and there goes any savings I had for other plans. Recently my Dad just came into remission from Acute Myeloid Leukaemia, he had several rounds of chemotherapy and then a stem cell transplant. We just get through that and now this. It's been a bit up and down to say the least.

Can you help me just a little?

Thank you xx Trace

About aHUS

aHUS is a genetic, chronic, ultra-rare disease that can progressively damage vital organs, potentially leading to stroke, heart attack, kidney failure, and premature death. aHUS is caused by genetic abnormalities that result in chronic uncontrolled complement activation leading to complement-mediated thrombotic microangiopathy (TMA) — the formation of blood clots in small blood vessels throughout the body. Patients with aHUS face a lifelong risk of TMA, which may lead to sudden, catastrophic, and life-threatening damage to the kidney, brain, heart, and other vital organs, and premature death.