Jake’s last chance to fulfill his dream

Hi, my name is Jake Vance. I am 33 years old and live with a condition called

Fredrick’s ataxia. I was diagnosed at 12, with doctors telling me I would only live till I’m 27 years old.

Friedreich's ataxia is a genetic disorder that affects the nervous system. It primarily impacts coordination and muscle movement. This leads to muscle weakness, loss of coordination, and impaired balance. It is a progressive condition that can worsen over time, affecting various aspects of my physical abilities and quality of life.

I’ve been wheelchair bound since the age of 14. It was a difficult thing to accept as a young man. With people my age excelling in live, I felt like my life was stuck at a standstill.

The last couple of years have been tough for me. I depend on carers 24/7, with little motivation to see or do anything. The disorder has impacted both my abilities to speak and to see. It’s been devastating to not being able to watch movies or talk to new people. Only the people that know me well can understand what I’m saying. As mentioned, that the doctors only said I would live to 27, sometimes I’ve been wishing that was true.

However, there is one dream that I’ve always had - to do a road trip in Western Australia and The Northern Territory. We moved a lot growing up, and I lived many places all along the WA coast and have so many great memories from my childhood there. My biggest dream is to be able to revisit all of these places and people. With my vision being now being impaired, all I can see is a blur. Visiting the places I’ve been previously would therefore make it easier for me to imagine what it looks like.

I dream of buying my own 4x4 van and make it wheelchair accessible. One that I can travel and camp with. Every weekend growing up was spent camping, it would be so epic reliving those memories.

I’ve been saving money for a long time, 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.

Any help towards my dream would be greatly appreciated.

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

-Jake Vance