One-year-old twins Louis and Theo Hankey currently spend every second day in hospital for life-saving infusions.
The Gold Coast boys have spent more days in Gold Coast University Hospital than at home in their first year of life due to a rare genetic condition.
Louis and Theo were initially given a running diagnosis of congenital nephrotic syndrome (CNS) for several months, it was later confirmed from a genetic test. CNS is a kidney condition that begins in infancy and typically leads to irreversible kidney failure by early childhood. Children with congenital nephrotic syndrome begin to have symptoms of the condition between birth and 3 months.) and will one day need a kidney transplant.
There has been reports of 200,000 to one chance of getting this particular genetic condition. For two non-identical twins to both have the same condition is unheard of.
Kath, Louis and Theo’s mum, said being in hospital so much took its toll.
“It didn’t affect me too much until I saw the things other mum friends were doing with their babies, having twins was always going to be a little different but having children with additional medical needs was isolating.” Kath said.
“It was so different to what I expected and being on a ward so much with artificial light and the stress of caring for our boys was really exhausting.
“I did what I could to make the best of it all – little things like going outside as much as we could on the days we were allowed home, bush kindy on our Wednesday day off, and catching up with people on weekends.”
Kath jokes she feels part of the furniture at GCUH but the reality is she and her family are a part of a medical support family every step of the way.
At the moment, the boys are in a relentless but fairly predictable routine of hospital visits and infusions that keep them alive.
In December last year, Titans half-back Ash Taylor first met Louis and Theo and their mum Kath.
As he was preparing for the arrival of his own son, Ash says the meeting helped give him perspective for what some parents have to go through.
“It was mixed emotions because I was going to have my son and to see what she was going through, it really put things into perspective,” Taylor said.
It’s why Ash is putting his voice behind the Gold Coast Hospital Foundation’s Scrub Up September campaign and is a GCHF Ambassdor.
“One in three Gold Coast kids will need our public hospitals this year,” Taylor said.
“Having my own son, if he were to have some troubles knowing that the Gold Coast Hospital Foundation would help out in any way they can to make life a little bit easier and to have that funding there to help as well, I think it’s great what they’re doing.
“With the Scrub Up September campaign, I think it’s really important that the community get behind the Gold Coast Hospital Foundation to help these sick kids in hospital.”