IMAGINE not being able to tie your own shoelaces, have a shower unassisted or being able to pick up your own baby?
Thomas Roberts was 14 when he was diagnosed with Friedreich's ataxia, a disease which is slowly destroying his nerves, spinal cord and muscles.
The average lifespan for someone with this rare form of degenerative disease is about 10 years from the date of diagnosis.
Mr Roberts is 24.
Some of the symptoms of the disease that affects 15,000 people in the world include difficulty walking, slurred speech, loss of sensation and scoliosis.
“Before I was on the frame and before people could see I was disabled people would think I was drunk or stoned or high,” he said.
“I got kicked out of pubs or refused entry because they thought I was drunk.
“One time the cops pulled me over because someone had watched me walk to my car and they thought I was drunk.”
The former Orange youth mayor moved to Batemans Bay 12 months ago and has since had a baby girl Amelia with his partner Teja Barry-Chambers.
Ms Barry-Chambers said she worries every day that tomorrow Mr Roberts might not be around anymore but she has no regrets.
“He’s doing really well,” she said.
“He is surpassing all expectations, every day.’
Mr Roberts is in constant pain but vows to fight on every day for his little girl.
Mr Roberts is back in Orange to help raise awareness of the crippling disease in his beloved home town.
As a youth mayor in Orange, Mr Roberts spent time campaigning for underage entertainment such as Rock-Up events and he campaigned for a youth centre.
He organised an International Ataxia Awareness Day show at the Occidental Hotel on Saturday with help from his music connections who have been able to secure a finalist from the 2013 season of The Voice, Simon Meli and his band The Widowbirds.
He said the help and support he received from people in the Orange community made his journey a little bit easier.
“Events like this and these sort of things are not possible without the help of amazing people,” he said.
Orange band The Burn Card will be performing as well as Bathurst band Little Brown and Katoomba’s one man band Claude Hay.
The show starts at 8 and is free entry.
If he raises $2000 from raffle ticket sales on the night he will shave his head on Monday at Rhonda’s Hairstyling Salon to help campaign and raise money for research into treatment for Ataxia.
There is no cure.
l For details on the gig and information on raffle prizes turn to Go, pages 12 and 25