Help Casey Beat aHUS

****Update May 9th 2017***

Hi everyone and thank you so much to all those who have donated to Help4Casey. Your kind words and support is much appreciated so thank you.

Just a quick update on our plan and Casey's condition. Casey's current treatment plan, in lieu of Solaris, is infusions of Fresh Frozen Plasma (FFP) which is done at Waikato Hospital. At the last consult with the doctors we were advised that FFP has proven to be ineffective as it hasn’t managed to get Casey into remission so the decision was made to stop this treatment and monitor Casey via blood tests. Casey appears to be as well as she can be expected at present albeit with a few bumps along the way, i.e., being completely wiped out at times with no energy due to low haemoglobin levels. Thankfully even though Casey hasn’t reach remission she isn’t in the acute phase of this awful disease either.

We have been advised that paying for Solaris at this point without full funding for an entire course of treatment would be unwise so we therefore play it day by day in the hope that the disease doesn’t rear its ugly head and lead us back to hospital for more intensive treatment such as dialysis. When the consultants advise us that paying for the full course of Solaris is the absolute last resort we will do this and deal with the fall out at that time.

We know of at least two other drug companies in trial stages to compete against Solaris and that other forms of treatment are being investigated. The hope is that these will eventuate soon and the current $400k p.a. treatment can be reduced to a more manageable cost but we are aware that any alternative treatment will still be very expensive. If an alternative treatment does become available which is just as effective and cheaper, donations to this page will be used for this.

For now, every day is precious and not taken for granted. Again, thank you to all of you who have supported Casey via donations, organising fund raising events, kinds words and gestures. All our love and thoughts are also with other families dealing with this disease and other rare diseases not supported by the governments health funding.

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Meet our family, the Gerrands. We have, myself, Lee. I’m the mum, and a nurse. My husband, Mark, a civil engineer. Our nine year old son, Tom, who likes playing cricket, touch rugby and video games. And finally, Casey, our beautiful wee five year old girl.

Before Casey started school, we decided to take an exciting holiday to Fiji. We spent a wonderful week in a resort, the kids playing and exploring in the sun.

Who would have thought that our family holiday would turn into such a nightmare? On the day before we were due to leave, Casey woke up with a sore throat and vomiting. The resort doctor gave her some antibiotics and pamol, and we waited for her to get better. But Casey didn’t get better, she got worse. Two days later she woke up and projectile vomited blood all over the hotel room. It was from there our nightmare started. Casey was taken to a nearby hospital where treatment was started, but the results of blood tests they took were so bad that Casey was transferred to two more hospitals that day until she ended up in the paediatric intensive care unit in a larger hospital in Lautoka.

In the intensive care unit, things continued to get worse: Casey’s blood test results continued to deteriorate and she continued to vomit blood. Blood started coming out everywhere, leaking out of her skin, in her urine and faeces. Casey was extremely distressed and so were we. Casey was so unwell and was deteriorating so quickly we weren’t sure she was going to make it. Our earlier request for Casey to be flown in an air ambulance from Fiji to Auckland was declined by doctors, who felt that Casey was so unwell that she was at serious risk of having a brain bleed while flying.

We watched, helpless, as our daughter became sicker and sicker, and we begged for her to be transferred home. Eventually, the doctors agreed and Casey was flown by air ambulance to the paediatric intensive care unit in Starship children’s hospital, Auckland. While we were glad to be back in New Zealand and receiving treatment in fantastic Starship, Casey’s condition continued to worsen. The results of her blood tests were so terrible that the doctors were preparing to take her into theatre to put special lines in that would allow them to give Casey dialysis because her kidneys were almost completely shut down. By some miracle, when they repeated these blood tests a few hours later they had not worsened, and when repeated again they were ever so slightly better.

Just when we thought things were improving, we were once again crushed by the diagnosis Casey was given: After a barrage of tests and examinations from what seemed to be just about every medical specialty in the hospital, a paediatric renal (kidney) physician came and delivered the news that Casey has the ultra-rare disease atypical haemolytic uremic syndrome (aHUS). aHUS is a life-threatening genetic disease in which a branch of the immune system attacks the body, leading to chronic inflammation, damage to blood vessels, low platelets (the cells that stop bleeding by clumping together), and destruction of red blood cells. aHUS is a life sentence, and around half of people who are diagnosed with it die, require kidney dialysis or have permanent kidney damage within 1 year of diagnosis.

Casey was diagnosed four months ago.

It hasn’t been an easy four months. After her diagnosis was confirmed by genetic testing, the doctors tried to give her transfusions of plasma in an attempt to stabilise the disease. We stayed at Starship for four weeks before we were allowed to go home and have treatments at Waikato hospital instead. Since then she has developed several complications, including a serious bacterial infection that saw her to be hospitalised for ten days. I have had to give up my job as a registered nurse in order to care for Casey. Tom has experienced so much anxiety throughout this time, understandably. How do I explain a disease that I don’t understand myself to a nine year old? Mark and I are terrified about what the future holds for our family.

Unfortunately, the transfusions have not worked. Casey now only has one option for treatment, a drug called eculizumab (sold under the name Soliris). Soliris is the only known treatment for aHUS and is also the most expensive drug in the world. It is not funded in New Zealand, but it is funded in many other countries including Australia. The renal doctor at Starship applied to Pharmac for special funding to get Casey the medication that she may die without, but it was declined.

Please, please give just a little to our fund, so that we can pay for the treatment Casey needs to live.