Donation protected
Hi everyone, my name is Kate and I am fundraising for a power chair to assist one of my favourite humans: the one and only Jess, fondly known to me as JBean.
When I met Jess at Curtin during our Sexology studies I knew this was someone amazing. What an energy and a vibe! They were full of knowledge and ideas, we became instant friends ( I am sure the purple hair had something to do with it). Jess came and joined the swing dance community which I was super excited about, however over time I noted their pain levels and mobility were being severely impacted. Within months Jess was relying on mobility aids and undergoing multiple costly investigations into why their body was giving out!
Whilst Jess has been living with chronic pain since they were little, none of their medical team were able to identify what was going on. After 28 years of different doctors, heaps of specialists, countless tests, x-rays, and scans and no results, Jess finally was diagnosed with Elher’s Danlos Syndrome in 2021.
Elhers Danlos Syndrome is a connective tissue disorder that changes the way the body makes collagen. Collagen is the most abundant protein in the human body, and is the ‘glue’ that holds the body together. Because collagen is all throughout the body, EDs affects everything - including how your brain functions (dysautonomia and brain fog), your GI system works, and how often your joints fully or partially dislocate.
I asked Jess what life was like at the moment for them and this was part of their response:
Well I'm in pain all the time, I get really tired really quickly, I can't stand long, and I have very little energy. My walking tolerance is less than 50m, which means that getting out and about is really difficult. The combination of EDs, Chronic Fatigue, Fibro, dysautonomia, and the bone tumour in my knee really stuffs me. I can use my manual wheelchair a little bit, but I dislocate my shoulders if I push myself too much. I'm stuck at home most of the time, and always need help with everything. I can't do my own grocery shopping, or just choose to "go for a walk". I can't afford to independently fund carers, so I rely on family and friends to help push me around, which makes things harder.
A power chair would dramatically improve life for Jess. I want my friend to have the ability to participate and thrive in the world! I want them to have more ease of access to the things we could do together. This is what it would mean to them:
Having a power chair and a way of getting it out of the car myself would give me a bit more independence and allow to me go out with friends, go shopping and the like. I wouldn't be stuck at home, and if this pandemic ever lets up, I'd have more options around employment.
When I met Jess at Curtin during our Sexology studies I knew this was someone amazing. What an energy and a vibe! They were full of knowledge and ideas, we became instant friends ( I am sure the purple hair had something to do with it). Jess came and joined the swing dance community which I was super excited about, however over time I noted their pain levels and mobility were being severely impacted. Within months Jess was relying on mobility aids and undergoing multiple costly investigations into why their body was giving out!
Whilst Jess has been living with chronic pain since they were little, none of their medical team were able to identify what was going on. After 28 years of different doctors, heaps of specialists, countless tests, x-rays, and scans and no results, Jess finally was diagnosed with Elher’s Danlos Syndrome in 2021.
Elhers Danlos Syndrome is a connective tissue disorder that changes the way the body makes collagen. Collagen is the most abundant protein in the human body, and is the ‘glue’ that holds the body together. Because collagen is all throughout the body, EDs affects everything - including how your brain functions (dysautonomia and brain fog), your GI system works, and how often your joints fully or partially dislocate.
I asked Jess what life was like at the moment for them and this was part of their response:
Well I'm in pain all the time, I get really tired really quickly, I can't stand long, and I have very little energy. My walking tolerance is less than 50m, which means that getting out and about is really difficult. The combination of EDs, Chronic Fatigue, Fibro, dysautonomia, and the bone tumour in my knee really stuffs me. I can use my manual wheelchair a little bit, but I dislocate my shoulders if I push myself too much. I'm stuck at home most of the time, and always need help with everything. I can't do my own grocery shopping, or just choose to "go for a walk". I can't afford to independently fund carers, so I rely on family and friends to help push me around, which makes things harder.
A power chair would dramatically improve life for Jess. I want my friend to have the ability to participate and thrive in the world! I want them to have more ease of access to the things we could do together. This is what it would mean to them:
Having a power chair and a way of getting it out of the car myself would give me a bit more independence and allow to me go out with friends, go shopping and the like. I wouldn't be stuck at home, and if this pandemic ever lets up, I'd have more options around employment.
Organizer and beneficiary
Kate Campbell
Organizer
Perth, WA
Jess Brooklyn
Beneficiary