FAMILY TOGETHERNESS: Lachlan Herbert with mum Christy and big brother Cooper.
FAMILY TOGETHERNESS: Lachlan Herbert with mum Christy and big brother Cooper. Warren Lynam

Lachlan's tuberous sclerosis a rare condition but improving

LACHLAN Herbert is a special boy.

The three-year-old from Buderim is one of just four Sunshine Coast children with the rare medical condition tuberous sclerosis.

The condition means Lachlan has tumours growing all over his skin and on all of his major organs, including as many as 30 attached to his brain.

But life has definitely improved.

Before recent surgery, Lachlan was suffering 10 seizures a day and required 24-hour supervision.

That forced his parents Scott and Christy to give up their jobs to care for him.

TC is so rare that the government doesn't recognise it for funding.

As a result, Mr Herbert has recently moved up north to work in the mines, leaving Mrs Herbert to care for Lachlan and his older brother Cooper.

Mrs Herbert said it was a constant struggle. "I have to watch him all the time just in case he has a seizure," she said.

"Sometimes I watch him and I don't know if it's just his normal behaviour or if he's having a seizure.

"Every day is different but we're getting there."

Lachlan has also been diagnosed with autism, which is a common side-effect of TC.

His development has been hindered by the condition. He is still non-verbal and struggles to communicate.

He is quite big for his age, meaning he requires constant physiotherapy and he didn't learn to walk until he was 16 months old.

"His communication skills are delayed by one to two years so we've had to put him into an early intervention program run by AEIOU Foundation," Mrs Herbert said.

"He is there five days a week and they teach him simple things like how to be independent and get himself a drink of water. But the costs of the program are $26,000 and we only receive $12,000 a year for his autism."