It’s almost bedtime at Isaac Gliddon’s Coledale home, but he’s on his feet dancing, and so is his mum, dad and sister Zoe.
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Carefree as it looks, this nightly ritual is the spoonful of sugar to the life-sustaining medicine four-year-old Isaac needs.
He was diagnosed with a rare genetic condition, congenital nephrotic syndrome, when he was 14 months old. The disorder means he loses protein through his urine. When the protein level of blood drops, liquid seeps out of the blood vessels and settles into surrounding tissue, causing swelling known as oedema.
Isaac “goes puffy” when he gets sick, his face so swollen his eyes are reduced to two narrow slits. He has a permanently weakened immune system, therefore bruises easily, risks pneumonia whenever he catches a cold and is forever banned from contact sports or swimming in a public pool.
One day – maybe once he is in school – his kidney function will be so low, doctors will remove one of the organs in the hope of slowing the rate of protein loss.
Once his remaining kidney starts to fail, he will undergo grueling dialysis, then a transplant, with his father Ross Gliddon already signed on as donor.
Isaac, blonde and cherubic, is a stoic soldier when it come to most of this. He has stamina no doctor can quite explain and takes his once-a-month blood test without complaint.
But the nightly needle – for blood clotting - is different.
Something in the stuff stings and even a tiny needle veteran needs a little something afterwards to get him through.
“It's quite painful, so he hates it, and he gets bruises on his legs from it,” said Isaac’s mum, Toni Mills.
“It’s a bit of a drama so we have a routine where we put his favourite song on, whatever it is at the time, and we dance afterwards and just shake it all off.”
In the spirit of shaking it off, and out of a need to “just do something”, Ms Mills is leading a walk to raise money for Kidney Health Australia to treat and prevent kidney disease.
The Big Red Kidney Walk, on October 21, will cross the Sea Cliff Bridge and will end with a sausage sizzle, live entertainment by local artist Sandon Groves and a picnic.
Complimentary transport to and from the event is available with proof of registration. This travel covers Sydney Trains and NSW TrainLink Intercity services (GatePass purchase required at domestic airport and international airport stations) and outer-metropolitan bus services in the Illawarra (Premier Illawarra, Premier Charters and Dion).
Registrations will not be taken on the day. Visit http://www.bigredkidneywalk.org.au/events/121/illawarra to sign on in advance.