Parent’s struggle

Staying alive continues to be a day-to-day struggle for little Billy Russell as his health deteriorates due to the rare disease, Charge syndrome.

The Daily in April revealed the plight of Lisa and Dean Russell, the parents of eight-month-old Billy, who were struggling to make ends meet and care for their seriously ill child.

The couple feared they would lose their Mooloolaba home after Lisa, a human resources consultant who worked for Kleenmaid, was left $12,000 out of pocket after the company’s collapse.

Dean, a mining engineer, was laid off late last year.

Now the Russells’ situation is even more dire.

Billy has been transferred to Brisbane for treatment, Lisa at his side, and Dean is on the Coast, still searching for a job.

“Billy’s been in hospital for eight weeks straight now,” Lisa said. “He was in Nambour hospital for five weeks and came home for a few days, but he totally deteriorated and was sent down to Brisbane.

“His secretions are constant and his tracheostomy has to be suctioned every few seconds. No one knows what’s going on.”

Specialists have been baffled by Billy’s condition.

He has undergone myriad operations and tests since the day he was born, becoming a human guinea pig.

At the age of four weeks, Billy underwent a tracheostomy.

His throat needs to be constantly cleared of mucus, he is severely deaf, has malformed eyes and poor vision, is tube fed, has facial paralysis, one kidney, and a hole in his heart. He is also now being tested for cystic fibrosis.

“It’s never-ending. We’ve had to stall our mortgage and I’m alone in Brisbane while Dean is on the Coast still trying to find work,” Lisa said.

“He’s managed to get some cleaning jobs, and that’s helped, but we’re doing it very tough.

“He’s willing to do anything.”

Lisa is unsure when she and Billy will return to the Coast but because Billy has not responded to new treatment, she believes it will not be in the foreseeable future.

“He’s a little battler and just keeps on fighting,” she said.

“It’s so hard watching your child go through all this prodding and the testing, but we’re trying stay positive.”

© APN News & Media Ltd 2009.