A Warrnambool boy will spend his 15th birthday at Ronald McDonald House as he awaits treatment for a rare liver disease.
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Luke King, 14, went to Melbourne for a procedure expecting it to take three days. Three weeks later, he and his mum Leanne Hooton are still there.
Luke’s friends at Brauer College organised a fundraiser on Friday to help with the family’s medical expenses.
Two years ago Luke was diagnosed with primary sclerosing cholangitis (PSC), a rare, chronic and potentially serious bile duct disease.
Miss Hooton said they first thought it was a gastroenteritis bug and after “numerous” doctors’ appointments and a visit to Monash Children’s Hospital (MCH), the disease was diagnosed.
His condition was controlled with medication until just before Christmas when she said “it began to rear its ugly head” again with Luke becoming “jaundiced and very yellow”.
“He’s got a nose feed in, he’s lost a lot of weight,” Miss Hooton said. “Eventually down the track he’ll have a (liver) transplant but we’re hoping it’s not going to be just yet. We’ve got to see what happens with the procedure on Thursday. It’s an uncommon disease and the scientists have got no cure for it. I’m still trying to fathom it and get my head around it.”
Luke has been in the MCH and the Royal Children’s Hospital (RCH). On Friday they moved to Ronald McDonald House where Luke will spend his 15th birthday on Tuesday.
He will undergo his third procedure at the RCH on Thursday to try and unblock his bile duct for the second time. “They couldn’t quite unblock it. They were talking of putting in a stent to widen it. So they’ll go in again to see if it has unblocked. If not the next resort will be a liver transplant.”
She said her son was very miserable. “He’s totally over it he wants to be well again. He’s got no taste buds and everything tastes horrible so he can’t eat and when he does eat it’s terrible.”
His mum was touched and surprised when she heard the middle school council and Luke’s mates had organised a footy colours dress-up day and sausage sizzle. “I had tears in my eyes. I couldn’t believe it. The school has been so great and so supportive. It’s not just the school, it’s everybody.
“You know how a community is and how they rally together, especially in a country community but I was not expecting any of this. Just their support was enough.”
Miss Hooton said year 9 co-ordinator Paul McFadden called and said the students wanted to do something to help. “He said ‘he’s family, he’s part of this school,” she recalled.
Kobi Bidmade, 15, said Luke was one of his best friends. “I wanted to do something because he’s always been there for me and I wanted to return the favour,” he said.
“We dressed up in footy colours because Luke loves his footy.”
The group said they hoped to raise $1000 from the day for the Western Bulldogs supporter. The final amount is yet-to-be confirmed.
Mr McFadden said the fact that Luke, a talented footballer, was ill had hit home with the students who were moved to help. He said the day united all ages as they worked together with a common goal.
“I say to them ‘grace is the ability to do something right when no-one is watching you’ and they had grace today,” he said.
Principal Jane Boyle said it was fantastic to see the students supporting one another.
“It’s always important to support all the other charities that we we do but it’s lovely to see them get behind a student that they know and have an affiliation with,” Ms Boyle said.