A FAMILY from Spring Ridge who have been in and out of hospitals with their three children for the past eight years say they couldn’t have done it without the Starlight Foundation.
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Kristine and Neil Burgess and their sons – Joe, 19, Charlie, 15, and eight-year-old Jack – have spent more than their fair share of time haunting hospital corridors and attending specialist appointments.
Eldest son Joe has had to have numerous operations on his knee, including a complete reconstruction; middle son Charlie developed a rare form of cancer five years ago; and Jack has had severe eczema and food and grass allergies, as well as being diagnosed with a type of cystic fibrosis at age four.
“Jack was 10 weeks old when we first started in the hospital system,” Mrs Burgess said.
“He had severe eczema and we had a 10-day stint in hospital at that time. Eight years later, we’re still doing this.
“When he was 18 months old his airways started to block off. He’d lay down at night and whether it was an allergen in the air, or he’d eaten something that didn’t agree with him, he began to produce too much mucus.
“Then when Jack was four he was diagnosed with a type of CF. Now we’re in this grey area where we don’t know if it’s his allergies, or what, but we’ve stuck to the CF program, with regular physio and a nebuliser every night.”
Carting three children around hospitals is no picnic, particularly when you’re waiting for appointments, boredom can set in and things can get a little hectic.
“I don’t know how we would have got along without the Starlight Room at John Hunter Hospital,” Mrs Burgess said.
“Jack has had to be poked and prodded from the start, but the Starlight people come into the room with him and entertain him while he’s being tested.
“He’s had to have about five sweat tests, but because he has severe eczema, he doesn’t sweat, so these tests can be quite painful. He’s had them from the age of three onwards.”
With Jack, they need to be in Newcastle about every six weeks, so thankfully, the family has a huge support network in the little village they call home.
“A lot of parents may not be aware there is a Starlight Room at John Hunter. We have used it and the one at Westmead Children’s Hospital, too,” Mrs Burgess said.
“Whenever we have an appointment, the Starlight Room is where we go first, to wait in between appointments.
“It’s a place Jack associates with smiles, rather than pain. I’m quite calm now going to the hospital.”
Today is Starlight Day – the organisation’s biggest annual fundraiser. Its aim is to raise $1.3 million to support more than 33,000 seriously ill children and their families around Australia, just like the Burgess family from Spring Ridge.
With all the challenges they’ve faced, Mrs Burgess said they just take things “one day at a time”.
“Jack keeps us all smiling. We have a really good support network and lots of friends we’ve had to rely on over the past eight years,” she said.
“Jack is a real character. He has this amazing personality and a resilience beyond his years. He walks into the Starlight Room and they all know him and say – ‘Jack’s back!’
“It’s a fun place where kids can do craft, play the PlayStation, watch movies or answer trivia questions. You just walk in the room and forget all your troubles.
“If your child’s happy, you’re happy and that makes the whole experience a lot easier.”
Mrs Burgess said their journey was far from over, though. This week they’re heading back to John Hunter to investigate a new type of immunotherapy from Canada that could help Jack enjoy some of the things in life we all take for granted.
If you’d like to make a donation to the Starlight Foundation, phone 1300 727 827 or visit the website www.starlight.org.au and click on the donate button.