Our beautiful Pipiwharauroa has been diagnosed with a rare blood disorder called HLH. She now needs a bone marrow transplant. See the update
Please see the update page for the latest news on Pipiwharauroa.
Pīpīwharauroa was born on December 24, 2017, the perfect Christmas blessing for her mum and dad-Ashley and Joey and her proud big sister Amohia. She had a healthy, happy start to life but at three weeks of age she was taken to Waikato hospital with elevated Bilirubin levels and then transferred to Starship where she was diagnosed with acute liver disease. She was placed at the top of the Australasian transplant list on January 14. Over the following days, she showed us what a little battler she is, surprising even the doctors with a positive turnaround in her results. Consequently, she was moved from ICU into a ward and taken off the transplant list.
Unfortunately over the past couple of days her condition has worsened again and we have been told that a liver transplant is now her best option. Her aunty Mina, who flew over from Sydney last week, was approved as a compatible donor and today(23/01/2018), Mina and Pīpīwharauroa are undergoing a liver transplant procedure. Pīpīwharauroa is apparently the smallest person to undergo this surgery in NZ. We all hold tight to the knowledge that both Mina and Pīpīwharauroa are strong and tenacious, they are surrounded by an amazing, dedicated medical team and they are encircled in love from their whānau and friends both here and in Australia.
Any funds raised will go towards supporting Ashley, Joey and Amohia as they try and negotiate life’s everyday practicalities such as accommodation for support people, Joey’s work commitments and travel from their home in Tokoroa to Starship over the next few months. The support needed for both Mina and Pīpīwharauroa’s recovery and ongoing treatment for Pīpīwharauroa over the next few months will be huge and the financial implications difficult to quantify. Needless to say, any donations which will help to ease the burden on Ashley and Joey so that they can focus on caring for their precious baby will be a huge help and gratefully received.
Pīpīwharauroa, nāhau i tō mai te aroha, mā mātou hai tō mai te whakaaro nui.
Pipiwharauroa is my niece Ashley's baby girl. Ashley and Joey are good, kind people and amazing parents. We are simply supporting them as we know they would support others in their time of need. We hope to ease their burden, to allow them to focus on their baby, Pipiwharauroa, who has a massive road to recovery ahead of her.
The funds will be used to support Pipiwharauroa and her family as they face a challenging time ahead, both financially and emotionally.
Pipiwharauroa-update 24 April 2018
Firstly, a massive thank you to everyone who has supported Pipiwharauroa and her family through the past months. Your support gives Ashley, Joey and Amohia strength to stay positive and to keep going. We have all been in awe of our little girl-she is an amazing, strong, happy baby, in no small part due to the love and care she receives from near and far. Ka nui te mihi.
When we first set up this page, Pipiwharauroa and her aunty Mina were undergoing liver transplant surgery. For those of you who don't know, the surgery and post-surgery went really well and the doctors were blown away by the progress Pipiwharauroa made in her recovery phase. Before long Mina was able to go back to Australia and Pipi and her family were moved from Starship to the Ronald Mcdonald apartments, then home to Tokoroa. Awesome news.
Unfortunately it soon became clear through weekly tests that Pipi's body was fighting something as her liver levels were high so she was called back to Starship for a biopsy. Pipiwharauroa's liver doctors, surgeons and a new team of haematologists and oncologists had a meeting discussing her high liver numbers and her biopsy results. After hours of discussion they were able to diagnose Pipi with HLH disease (Haemophagocytic Lymphohistiocytosis). Doctors are convinced this disease was the cause of Pipiwharauroa's acute liver failure
Haemophagocytic Lymphohistiocytosis is a rare blood disorder, when some of your white blood cells (Histiocytes)are overactive and start attacking healthy lymph tissue. In Pipi's case they attacked her liver when she was newly born and results from her biopsy show they have now started to attack her new liver.
So where to now? The next step for Pipiwharauroa will be a bone marrow transplant. We have been blessed with a complete bone marrow match from the world wide registry and by a miracle chance her 100% match is from New Zealand. This is truly amazing as doctor's have said chances are slim to find a match from the same country and if no match it could take months to years until a complete match is found world wide so we are truly counting our blessings and so thankful.
Pipiwharauroa and her mum have been approved to go home to Tokoroa for four weeks, then they'll be back to starship two weeks before Pipiwharauroa starts her bone marrow transplant. These two weeks before and 4-6 weeks after her bone marrow she'll be in isolation at starship hospital.
Pipi's bone marrow transplant allows her to get a brand new immune system. This is a long and painful process taking up to eight weeks from the day the procedure will take place.
As her liver transplant and her HLH disease are two separate situations her liver team, haematologist and oncologists are doing amazing work to ensure Pipiwharauroa is getting the best care. They are miracle workers here at Starship just like our cutie!