Andrew (Paige’s Dad) – “When Paige was born she contracted a staph infection in her navel which travelled up to her liver and destroyed the Portal vein which then destroyed the blood flow. The Portal vein supplies 70% of the livers blood supply and 50% of the livers oxygen. Paige’s Portal vein is completely blocked.
What Paige has is very rare. One in one million. We need to take Paige to Chicago for surgery called a Meso-Rex Shunt. It’s actually a group of surgeries for an extremely rare condition Paige has called Non Cirrhotic Portal Hypertension with Esophageal Varices with Pancytopenia and Iron Deficiency Anaemia. Everyone asks why it can’t be done in Australia. The Rex Shunt can be done in Australia but the Rex Shunt for Paige’s condition can’t be done here. There is a surgery here called the Meso-Rex Shunt but because of Paige’s stage of growth, her vein size and the fact that it was misdiagnosed for over 4 years there is only a 50% chance and that’s not enough. Paige is now 10 years old so the veins in her body have grown but the veins in her liver haven’t. It’s like hooking up a big hose to a tiny hose. The problem is the blood flow that flows through the Portal vein is full of digestive products. It’s dirty blood that hasn’t been filtered by the liver yet. It’s too risky here. The chance of thrombosis around the join caused by dirty blood is too high.
Paige has suffered for 10 years. The most disturbing symptoms are massive blood loss internally which is so difficult to know when it’s happening. Because there is no blood flow to the liver Paige has trouble making the blood clotting factors we all have to stop bleeding. The other veins leading to her liver are at very high pressure because of that blockage so she’s more likely to bleed. The pressure that builds up inflates other organs including the spleen and it destroys her own blood as fast as her bone marrow can make it. She often bleeds inside, sometimes only little bits and sometimes catastrophic. She may go really white or she’ll get dizzy, feel icky in her throat or a tummy ache but because its inside it can be hard to know.
The infection came shortly after birth in her umbilical cord. It showed up a bit pink and the doctors said to keep it clean and dry but they were only seeing the tip of the iceberg. A liver transplant isn’t on the agenda as it won’t actually fix Paige’s problem. If she deteriorated to the point where her liver died she would still need this operation. It’s the veins to the liver that are the problem. Without this surgery her liver will die. It’s already showing signs of being under immense stress. She recently returned the worst result she has ever had in her liver function tests. You can’t live without a liver.
She’s 9 years old and turning 10 on the 26th March so the fundraiser will also be her birthday party. The chance of success in Chicago is 90% rather than 50% here in Australia. Paige has already had 15 surgeries and this has been going on all her young life which is 10 years too long. We can sit around and offer her another operation with a 50% chance or go to the USA and have it fixed. Doctors say It’s the most complex condition for modern medical science because it’s a multi faceted condition which affects a lot of organs. It affects the brain, the skin, everything. It’s tied to malabsorption. Dirty, unfiltered blood flowing through all organs. It eats all her blood cell lines so she’s critically low in her blood counts. All this can be fixed with this surgery that is relatively risk free. The surgeon we will have is the go-to surgeon for all the worst cases in the world. People come from all over the world to this one centre. It’s very individualised surgery.
Paige knows what’s happening. She’s missed so much school, hundreds of days. It’s too dangerous for her to go to school now so she is home schooled. It’s too dangerous for her to have vaccinations. She was bitten by a dog recently and they refused to vaccinate her so she is compromised in so many ways. She’s on a restricted diet. Sugar can stimulate the left gastric vein which can be fatal if it pops and that has happened twice now. All different veins burst in her body all the time, in her colon, her perineum, her stomach and her throat. She can lose litres of blood in seconds. She is always bleeding, the medicines are struggling to keep up. She is dizzy, lacks concentration. The blood now bypasses her liver. It goes to her heart, her brain and various other organs which don’t cope with dirty, unfiltered blood. She gets Portosystemic Encepholpathy which causes behavioural problems. These problems have lessened as she has grown. That was the most distressing thing as a parent, seeing your little girl hysterical, screaming, sleepless and in pain. So unbearable for a parent to see. Fortunately that has slowed down but other complications have gathered and become more extreme.”
We are raising $255,000 dollars which will cover flights, surgery and medical costs. So far we’ve raised $89,000 of which $60,000 of that has been kindly donated by the Lions Club.
Paige – “I’m scared to do it but I don’t want to have this anymore. I don’t really want either.”
There is a fundraiser for Paige with amazing acts at Lismore Workers Club. There’s also another fundraiser at Coraki Hotel ( all links below) and most importantly a link to Paige’s Gofundme. Please remember if we all give only $5 which is pretty much a cup of coffee we can get Paige this life saving surgery. Thank you Humans 