Billy O’Brien with Shellharbour bowler Phil Gale and support group director Mary Woods. Picture: KEN ROBERTSON
Thanks to Shellharbour Bowling Club members, the life of Warilla "cotton wool kid" Billy O'Brien is a whole lot brighter.
The Shellharbour Sunday Morning Bowlers group has been supporting Billy, who suffers from the rare skin condition epidermolysis bullosa (EB), and his family for a number of years.
So when it came time to divvy up funds earmarked for a new clubhouse, the bowlers kept a large chunk for the Debra Foundation, which provides support for families living with EB.
The bowlers raised $70,000 towards a new building - with a large percentage coming from a nude calendar - but parent club Warilla Bowls and Recreation Club has ruled out replacement premises after the present club is demolished.
On Sunday, the Shellharbour club handed over $10,000 of that fighting fund to the foundation, as well as a new laptop for seven-year-old Billy.
"EB is a genetic condition whose sufferers [known as "cotton wool" or "butterfly" children] lack protein in their skin, which means that if there's any friction on the skin it will blister," Debra Australia director Mary Woods said.
"In severe cases the oesophagus may be affected, making it hard to eat and tube feeding may be required.
"My grandson Joshua Gibson, who passed away from EB two years ago, required feeding through a 'button' in his stomach."
About 1000 children are affected with the condition across Australia, and Ms Woods said the donation would be used for support services and equipment.
It sometimes takes Billy's parents Rebecca and David hours to change his bandages. Billy suffers with constant pain as well as the sadness of losing his older brother and great mate, Jayden, who also had EB and passed away 18 months ago.
"We've made Billy an honorary member of the club ... " said Shellharbour Sunday Morning Bowlers president Phil Gale.