Fundraiser for James

A fundraiser for gravely-ill Umina toddler James Rugless will be held at Club Umina on Saturday, March 6.

The fundraiser is to help ease the financial burden on baby James' parents, Susan and Troy, who are struggling to meet his medical costs and pay off their mortgage.

The fundraiser will begin with a barbecue from 5.30pm.

The night will progress with raffles, auctions and night time lawn bowls.

James suffers from with Wiscott-Aldrich Syndrome, otherwise known as the "boy in the bubble" syndrome.

James was born by caesarean section on January 24 last year at John Hunter Hospital in Newcastle.

His mother Sue was just 30 weeks into the pregnancy but James had stopped growing at 26 weeks.

He weighed in at just 1060gm.

He had a hole in the heart, triple hernias and other complications.

By the time James was five months old, he ad been admitted to hospital 29 times for operations, and with infections and complications.

It was at that stage he was diagnosed with Wiscott-Aldrich Syndrome.

James has never lived a "normal" life and neither have his family since his birth.

He remains in a sterile living environment and can have absolutely no contact with the outside world, as any infections can be serious to his health and could lead to death.

When there were no matches for a bone marrow donor after a worldwide search James received a blood cord transplant (stem cell) donated from a young French girl, in October of last year.

He was also the first person to have a blood cord transfer in Australia and is also only the third person in Australia to be diagnosed alive with Wiscott-Aldrich Syndrome.

There have been 18 other cases but have unfortunately only been diagnosed after death during an autopsy.

"James is on the road to recovery and there is now a light at the end of the tunnel," said friend of the family, Kelly McCormack.

"However, it's a long road and there could be many more obstacles that could get in his way as his treatment has never been done before."

Sydney radio station 2UE has donated $7000 worth of advertising and one hour is expected to be dedicated to James on Mike Carlton's program.

Email, February 20