A disabled Australian man nearing the end of a lifelong battle with a genetic disorder has asked for help to fulfil his dying wish.
Jake Vance, 33, has been in a wheelchair since he was 12 and recently lost his sight and speech due to Friedreich’s disease.
His doctors expected him to live only 27 years before succumbing to a rare genetic disease that was slowly but surely attacking his nervous system.
Tuva Renholt, Mr Vance’s caregiver for the past three years, said that while he is a “fighter,” the loss of his sight has left him depressed.
“He doesn’t like going outside because he can’t see. He also doesn’t like talking to new people because they can’t understand him,” Renholt told Daily Mail Australia.
‘So he’s mostly at home and is very depressed. He’s really in a slump at the moment.’
She said Mr Vance has one final wish: to take a road trip through Western Australia and the Northern Territory, to the places where he lived and holidayed with his family as a child.
However, the carer said he barely receives enough financial support from the NDIS to afford 24-hour care, let alone save money for a trip, so he has turned to Australians for help.
West Australian man Jake Vance (pictured) has asked Australians to help him take one last road trip to visit the places he visited in his youth before succumbing to a rare genetic disorder
Ms Renholt said Mr Vance often participates indirectly in the lives of his team of caregivers.
“He loves listening to his caregivers’ stories because he can’t do much himself,” she said.
‘After every weekend he says, “Tell me, what are you doing? Did you go out?”‘
She added that Mr Vance is “the strongest person I’ve ever met in my life” and that she doesn’t understand how he manages not to complain despite being “completely trapped in his own body and life”.
The caregiver also noted that he often thinks back to the life he had before the disorder struck.
“He always talked about taking a road trip to the places he used to live,” Renholt said.
Mr. Vance (right) has been in a wheelchair since he was 12 due to Friedreich’s disease, which has recently caused his vision and speech to deteriorate.
“He has a lot of friends who still live there, so he always wanted to go there.”
“But it’s about the money, his family doesn’t really have much money.”
To ensure that Mr. Vance would travel again, Ms. Renolt helped launch a GoFundMe to help pay for a ‘car and also the costs along the way’.
She said his list of destinations included Canarvon, Gnaraloo Station, Keep River National Park, Coral Bay, Karratha, Humpty Doo and Broome.
Mr. Vance would love to outfit a pickup truck with camping gear so he can relive the memorable moments of his youth.
Photos from that time show Mr. Vance as a child, laughing as he fished in the ocean, before having to sit in a wheelchair on the water’s edge.
The young man (pictured as a child) wants to take one last road trip so he can relive his childhood experiences in some of the most pristine areas of Western Australia and North America.
Mr Vance’s carer has appealed for help from Australians because he is 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 the other reason for the trip is so that Mr Vance can remember what the houses used to look like and reminisce about his childhood.
“He says, ‘When I go to all these places, I can imagine what it looks like because I’ve been there before,’” she said.
In a message on the fundraising page, Mr Vance, with help from Ms Renholt, wrote that the trip was “the only dream I’ve ever had”.
“We went camping every weekend as a kid, and it was so great to relive those memories,” Mr. Vance said.
“But it has been a challenge with the cost of living and the limited disability benefits. I am struggling to reach my goal and I feel like time is running out.
‘I don’t know how much longer I have to achieve my dream because my body is deteriorating every day.’
The fundraiser has raised more than $2,000 in 10 days so far.