‘Paige’s Fantasy Fun Day Fundraiser’ is being held at the Iluka Bowls Club starting at noon this Sunday May 7.
Ten-year-old Paige Humphreys suffers from portal vein thrombosis, which Chicago-based doctor, Richard Superina, describes as “a relatively rare condition”.
Expanding on the condition’s rarity he says in a video on Paige’s gofundme webpage: “We don’t really know what the incidence of portal vein thrombosis is.
“Even if it was one in 10,000 children, no individual hospital could garner the experience we have by operating on people in their local catchment area.
“The only way to get experience is to have people come to you from far away, and that’s what has happened to us.
“We’ve become pretty much, I think, the leading centre in the world for this kind of condition.
“I can help [Paige] because I’ve operated on literally hundreds of children with the same condition; where we reconstruct this portal vein which has been destroyed or never formed properly, so that the risk of bleeding returns back to zero.”
Iluka resident Leona Jackson was so affected after hearing of Paige’s plight that she decided to organise the event.
“I was invited to attend a gig at Lismore which turned out to be a fundraising event for Paige,” she says. “I met Paige and briefly her parents.
“I came home and decided to look up gofundme.com/PAIGE-HUMPHREYS and I cried. I realised that this humble little family were trying to save her life and I wanted to do something for them.
“So I offered to sing with my band (Leona Jackson XXX LOVERS) at the Iluka Bowling Club; but the manager said: ‘Why don’t we do a little fundraiser?’
“It escalated from there into a big fundraiser, as local Iluka and Yamba businesses have come forward with wonderful donations, from $20 vouchers through to a week’s stay in a resort; and there are 15-minute helicopter scenic flights on the day for eight lucky winners, too.”
Paige’s condition was most likely caused by a staph infection and went undiagnosed for four years; her father, Andrew, tells this story on the gofundme website: “The staph infection simply appeared as pinkness around her navel [just after her birth].
“…It did not raise any alarms with doctors and nurses. We were advised simply to keep it clean and dry.
“Later, Paige barely slept, spent weeks and months screaming in pain and her belly swelled. She endured rigorous testing and imaging but a correct diagnosis was not given.
“On a cold night, in July 2011, my beautiful tiny little girl, Paige, woke in … pain and asked: ‘Daddy, can I have a drink?’ Then we saw something that will haunt our dreams forever: Paige was vomiting litres of dark red blood.
“I called an ambulance, and I met them on the road half way to town, where I gave them my floppy little girl. She was flown interstate and stabilised.
“…Unfortunately, years of misdiagnosis took its toll, and she has never been a suitable candidate for successful surgery in Australia because of the delay.”
Andrew told the Independent that there is only one surgeon in Australia who performs the operation, but only at a ‘standard’ level, which he says is not suitable for Paige’s condition.
“Australian surgeons are daunted by it, but are obliged to offer a 50 per cent chance of success,” Andrew said.
“Because of the horror story we’ve been through with the misdiagnosis we didn’t feel that 50 per cent was acceptable and looked around elsewhere and were offered a 90 per cent or better chance in Chicago.”
The surgery and travel will cost $328.700. So far $113,241 has been raised/pledged, including some large donations from the likes of the Australian Lions Foundation ($50,000); Casino Lions Club ($9,000); Coraki Fishing Club fundraiser at Coraki Hotel ($9,507) and a concert fundraiser by Bourbon Street, The Buckleys, many entertainers and 88.9FM at Lismore Workers ($6,810).
Leona says there will “be lots of things for the children – a Jumping castle, face painting, a photo booth etcetera – and live music with bands donating their talents as well” at the fundraiser.
“Come along in dress-up clothes and share in the fantasy day to help a little girl get to Chicago for her life saving operation. Time is of the essence.”