Info Maddie’s Condition…July 2016
The antibodies mean it will be much harder to find her a donor match. With such a small pool of donor kidney's in New Zealand, it may not happen for years.
Adjusting to the dialysis machine is a challenge and every afternoon Maddie has to stop whatever she is doing and be hooked up to the machine and then every evening again at about 8pm and over the next 10 hours the machine performs the vital function that her kidney can't.
Maddie tries to get some sleep while bags of fluid flow through a tube into her abdomen, filtering the waste products and "cleaning" her blood.
The dialysis machine sounds a very loud alarm indicating a blockage on average six times every night.
Maddie’s parents Sarah and Adam Collins have been solely responsible for Maddie's dialysis as there are no paediatric nurses trained to use the machine in Canterbury.
Each morning the bags of fluid must be scrutinised for signs of infection – which could be fatal. It is an exhausting responsibility for the most dedicated parent.
For Maddie, sleep-overs and swimming are out, as are visits to friends and dinners out.
Psychologically, the disease has taken a toll.
Maddie was diagnosed with Post Traumatic Stress Disorder this year because of the intensive medical interventions, Sarah Collins said.
The Auckland Renal Transplant Group prioritised patients on their likelihood of surviving for five years after the transplant, the degree of tissue match with the available donor and how long they had waited, a spokeswoman said.
"It's just hell being on dialysis. It's no life for a child."
Doctors told the family last week Maddie had been accepted on to the waiting list for a kidney donation, but she would not be considered for a live donor transplant at this stage.
Sarah Collins said the news was difficult to hear.
A pre-transplant treatment required for Maddie means she could not use a deceased donor kidney.
Maddie Collins' parents want to raise $350,000 to find their daughter a kidney and the United States is the most likely place that a transplant could happen to save her life.
The Canterbury 12-year-old's family have exhausted their options to get a life-saving transplant in New Zealand.
Maddie is being kept alive by dialysis but this is not a cure and there are many other side effects and consequences that go with her treatment.