A disabled Australian man nearing the end of a long battle with a genetic disorder has appealed for help to fulfil his final wish.
Jake Vance, 33, has been in a wheelchair since he was 12 and recently lost his vision and the ability to speak clearly due to Friedreich’s ataxia.
His doctors only expected him to live until he was 27 before succumbing to a rare inherited disorder that was slowly destroying his nervous system.
Tuva Renholt, who has cared for Vance for the past three years, said that while he is a “fighter,” the loss of his sight has left him devastated.
“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,” Renholt told Daily Mail Australia.
“So he’s just spending most of his time at home super depressed, he’s kind of at rock bottom right now.”
He said Mr Vance’s final wish was to take a road trip across Western Australia and the Northern Territory to the places where he lived and holidayed with his family as a child.
However, the carer revealed he barely receives enough financial support from the NDIS to cover 24-hour care, let alone save for a trip, and has appealed to Australians for help.
Jake Vance (pictured), a man from Western Australia, asked Australians to help him take one last road trip to revisit the places he visited as a child before he succumbed to a rare genetic disorder.
Ms. Renholt said Mr. Vance often lives vicariously through the lives of his team of caregivers.
“He loves hearing stories from all of his caregivers’ lives because he can’t do much for himself,” she said.
“After every weekend, he would say to me: “Tell me, what are you doing? Did you go out?”
She added that Vance is “the strongest person I’ve ever met in my life” and doesn’t know how he refrains from complaining despite being “totally caught up in his own body and life.”
The caregiver also noted that he often reminisces about the life he had before the disorder took over.
“He’s always talked about taking a road trip to go back to all the places he used to live,” Renholt said.
Mr Vance (right) has been confined to a wheelchair since the age of 12 due to Friedreich’s ataxia, which in more recent times has caused his eyesight and ability to speak to deteriorate.
‘He has a lot of friends who still live there, so he’s always wanted to go.
“But it’s a question of money, his family doesn’t really have much money.”
Eager for Mr. Vance to experience one more trip, Ms. Renolt helped launch a GoFundMe to help pay for ‘a car and also road expenses.’
He said his list of destinations included Canarvon, Gnaraloo Station, Keep River National Park, Coral Bay, Karratha, Humpty Doo and Broome.
Ideally, Mr. Vance could outfit a pickup truck with camping gear so he could relive the memorable moments of his childhood.
Images from that time show Mr Vance as a young boy, standing and smiling as he fished in the ocean, before being confined to sitting on the water’s edge in a wheelchair.
The youngster (pictured as a child) is keen to take one last road trip so he can relive his childhood experience in some of the most pristine areas of WA and NT.
Mr Vance’s carer has appealed to Australians for help because he is unable to work, only earns enough from the NDIS to cover 24-hour care and does not know how long he has left to live.
Ms Renholt said another reason for the trip is so Mr Vance can try to remember what they were like before and relive memories from his childhood.
“He says if I go to all those places, I can visualize what they’re like because I’ve been there before,” she said.
In a post on the fundraising page, Mr Vance (with help from Ms Renholt) said the trip is “the only dream I’ve ever had”.
“As a kid I spent every weekend camping. It would be epic to relive those memories,” Vance said.
“But it has been quite a challenge due to the cost of living crisis and limited disability pension. I am struggling to reach my goal and feel like time is running out.
“I don’t know how much time I have left to fulfill my dream, my body deteriorates every day.”
The fundraiser has so far raised over $2,000 in 10 days.
