Jake Vance is dying from a rare disorder he’s battled most of his life. Now he’s asking Aussies to help him realise his final wish via Gofundme

A disabled Aussie nearing the end of a lifelong fight with a genetic disorder has asked for help to fulfil his final wish.

Jake Vance, 33, has been wheelchair-bound since the age of 12 and more recently lost his sight and ability to speak clearly due to Friedreich’s ataxia.

His doctors only expected him to live until the age of 27 before succumbing to the rare, inherited disorder slowly destroying his nervous system.

Mr Vance’s carer for the past three years, Tuva Renholt, said that while he’s a ‘fighter’, the loss of his sight has left him dejected.

‘He doesn’t like going out because he can’t see, he doesn’t like talking to new people because they can’t really understand him,’ Ms Renholt told Daily Mail Australia.

‘So he’s mostly just at home being super depressed, he’s kind of hit rock bottom at the moment.’

She said Mr Vance has a final wish to go on a road trip across Western Australia and Northern Territory to the places he lived and holidayed at with family as a kid.

However, the carer revealed he receives barely enough financial support from the NDIS to cover 24-hour care let alone save for a trip, and has asked Aussies for help. 

Ms Renholt said Mr Vance often lives vicariously through the lives of his team of carers.

‘He just loves hearing stories from all of his carers’ lives because he can’t do much himself,’ she said.

‘After every weekend, he’s like: “Tell me, what do you do? Did you go out?”.’   

She added that Mr Vance is ‘the strongest person I’ve ever met in my life’ and doesn’t know how he refrains from complaining despite being ‘totally trapped in his own body and life’.

The carer also noted that he often reminisces about the life he had before the disorder took hold.

‘He’s always spoken about going on a road trip back to all the places that he used to live,’ Ms Renholt said.

Mr Vance (right) has been confined to a wheelchair since 12-years-old with Friedreich’s ataxia, which has in more recent times caused his sight and ability to speak deteriorate

‘He has lots of mates that still live up there, so he’s always wanted to go.

‘But it’s the money side of things, his family doesn’t really have much money.’

Keen for Mr Vance to experience one more trip, Ms Renolt helped launch a GoFundMe to help pay for a ‘car and also expenses on the way’.

She said his list of destinations included Canarvon, Gnaraloo Station, Keep River National Park, Coral Bay, Karratha, Humpty Doo and Broome.

Ideally, Mr Vance wants to deck out a ute with camping gear so he can re-live the memorable parts of his childhood.

Images from the time show Mr Vance as a kid standing and smiling while fishing in the ocean, before being confined to sit on the banks of the water in a wheelchair.

The young man (pictured as a kid) wishes to go on one last road trip so he can re-live his childhood experience in some of the most pristine areas of WA and the NT

Mr Vance’s carer has appealed for help from Aussies as he’s unable to work, only earns enough from the NDIS to cover 24-hour care and doesn’t know how long he has left to live

Ms Renholt said another reason for the trip is so Mr Vance can try and remember what they once looked like and revive memories from his childhood.

‘He says that “If I go to all those places then I can kind of visualise what it looks like because I’ve been there before”,’ she said.

A post to the fundraiser page by Mr Vance – with the help of Ms Renholt – said the trip is the ‘one dream that I’ve always had’.

‘Every weekend growing up was spent camping, it would be so epic reliving those memories,’ Mr Vance said.

‘But it’s been challenging with the cost of living crisis and the limited disability pension. I’m struggling to reach my goal and I feel like time is running out.       

‘I don’t know how long I have left to accomplish my dream, with my body deteriorating every day.’

The fundraiser has so far received more than $2,000 in 10 days.