Little Luka’s Story

The eight water bottles 19-month-old Luka Woodward used to take to day care would make any camel proud, jokes his mum Debbie, 34, from Shorncliffe in Brisbane. But behind the humour is an exhausted woman waking eight times a night to keep her son alive.

‘When Luka was first born he was a happy bouncing baby boy, but at about six months old he developed an abnormal taste for four to six bottles of water a night on top of breast milk,’ Debbie says.

‘At that stage he was going through about 15 to 18 nappies a day, almost on the hour. I lost count of the number of doctors I went to who told me it was nothing serious. They said no diabetes was detected or that it may be a viral bug.

‘By the time he was one he was the same weight as a six-month-old and was vomiting three times a night.’ Eventually Debbie was referred to a paediatrician, who looked at the lethargic, little boy barely able to sit himself up, and told the Woodward family something was terribly wrong.

After numerous tests Luka was diagnosed with a rare genetic renal condition called cystinosis. ‘Because our first two children were perfectly normal, we never knew the risk – but apparently if both parents carry the gene every pregnancy means a one in four chance that the baby will be affected,’ Debbie explains. ‘We picked the wild card in the gene lottery. The condition is very rare and in Australia today there are only 26 other known cases.’

Cystinosis is notoriously hard to diagnose, and often affects children with pale blonde hair and fair skin. ‘They often appear anaemic and have episodes of dehydration, which is the first telltale sign,’ Debbie says. The cruel wasting disease causes the amino acid cystine to accumulate in cells and form crystals. The crystals can affect nearly every organ in the body but generally strike the kidneys and eyes first.

Luka will experience either partial or full blindness and will have to be on six or seven medications a day for the rest of his life. Doctors have told Debbie that Luka will probably ‘not live to be an old man.’ But she hopes the kidney transplant he will eventually need may buy him time.

‘I just want to highlight the plight of these kids and raise awareness for kidney donations that may benefit children like Luka and others like him down the track,’ she says. For Debbie and her husband Darren, every day is a battle as Luka now receives his nutrients nightly through a tube attached to his tummy and still drinks huge amounts of water. His illness also now prevents him going to day care. ‘The cost of nappies is enormous, as well as the six odd medications he is on every day,’ says Debbie, who averages about four hours sleep a night to keep up with the relentless demands of her little patient.

‘I feel guilty I cannot spend as much time with my daughter Jordyn, 7, and my son Garth, 4,’ Debbie says. A new drug called Cysteamine also provides a glimmer of hope. ‘It helps dissolve the crystals which can prevent organ complications to some degree,’ Debbie explains. Despite her exhaustion, Debbie remains positive. ‘Watching Luka’s little face makes it all worth the effort,’ she says. ‘And in a brave new world of medical treatments we always have hope.’

Compiled by Jane Worthington