Young Sammy Voss was diagnosed with Batten Disease (CLN2) a one-in-25-million inherited disease that primarily affects the nervous system.

CLN2 is fatal, and with constant seizures it progressively takes away the ability of children to talk, walk and even see.

But now a potential cure has emerged in America called RGX 181.

Mother of Sam Voss, Sharron Voss said Sam was currently waiting for application process to begin in June 2020.

"Once the approval has come through they will start the first ever human trials in America that can potentially halt the disease," Mrs Voss said.

"We are raising money through this New Year's event to get him to America for a potential cure for his batten disease."

The event to raise funds for Sam is called Bling It In The New Year and is located at Arvos from 6:30pm.

Ms Voss said there would be fantastic prizes to be won and a brilliant night to be had.

Please contact Arvos tapas bar or Sharron for tickets on 0401 939 321.

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