Butterfly children: Brave Billy battles rare skin condition

The slightest touch will cause the nine-year-old's skin to break and blister and his parents David and Rebecca spend three hours most days carefully bathing him in bleach, applying medications and wrapping him in bandages.

Billy suffers from epidermolysis bullosa, a rare skin disease that three years ago led to the death of his beloved big brother Jayden.

"He can't play contact sport or do many of the things kids his age do," Mr O'Brien said.

"He's stuck indoors most of the time - especially on hot days like these - and along with the ongoing pain of his condition, it also hurts him to see other kids doing the things he wants to try, but can't.

"He goes to school with a full-time aide but last year he missed 65 days of school due to his illness."

Billy has undergone nearly 30 operations at Randwick children's hospital and is bracing for a couple more in the coming months.

"There's various forms of EB including a milder form which affects the top layer of the skin, but Billy has one of the most severe forms which affects all seven layers of his skin and internally," Mr O'Brien said.

"He's due to have an operation on his oesophagus in February, as he chokes on nearly all food due to the condition causing the passageway to narrow, and he only weighs just over 20 kilograms.

"He also needs to see a hand specialist to have an operation to open up his hands which have started to contract into fists."

Family and friends have set up a fund-raiser to help with continuing costs for the daily bandages and some medications which are not covered by the PBS, as well as hospital expenses.

The Sydney Harbour Cruise will be held on February 7 and tickets are $80 which includes transport to and from Sydney, a four-hour cruise and dinner.

Anyone wishing to book tickets, or businesses wanting to offer prizes for the raffle, should contact Mr O'Brien on 0405 682 976.