New Powerchair that is Safe (as pictured)

Note: because I don’t have a drivers license or passport for ID my husband Alexander Cox has to be the one who receives the donations but it is the same joint bank account.

IMPORTANT: if you donate, check how much you are tipping go fund me. It is OPTIONAL but autofilled at a high percentage of your donation.

Hi, my name is Myvanwy. I have multiple complex disabilities including hypermobile Ehlers-Danlos syndrome, Postural Orthostatic Tachycardia Syndrome, chronic fatigue syndrome, fibromyalgia, spinal osteoarthritis and Functional Neurological Disorder. I have been using a wheelchair for seven years. I need it to mobilise on a daily basis both inside and outside my home. After waiting six months for NDIS to approve a new chair they have declined my request and not told me why. My support coordinator believes it is probably because my OT report was not very well written, as I obviously need the new chair. I have been renting this chair using my NDIS funding for 6 months as my old chair is no longer safe for me to use and causes significant pain to use. I have fallen out of my old chair multiple times and since October last year have also been having daily seizures and need a seatbelt to hold me in the chair. I also experience temporary paralysis and muscle weakness that means I cannot hold myself up without a high backrest and headrest. The chair I need is called a magic mobility 360 power chair and is sold by Astris PME. It has completely changed my life and using it has made me feel like a whole person for the first time since I lost the ability to mobilise independently seven years ago. I am terrified of having to use my old chair again. If I have to use it, I am confident that I will not be safe, and due to how much pain it causes me to use it I will probably become housebound again, and lose all the freedom I have only recently gained. I am going to challenge the NDIS on their decision but unfortunately they have also forbidden me from using my funding to continue to rent the chair. This means that unless I buy the chair myself it will be taken from me in the near future (probably in less than a week). This means instead of being able to move around my home, complete tasks like going to the bathroom or getting food and water and leaving my home, I will be helpless and totally dependent on my husband. I will have to spend all my time in bed, because if I have a seizure whilst in my old chair (I have seizures every day) I will fall out and be injured. My pain level will also increase significantly as my old chair causes quite severe joint and muscle pain due to my hEDS and the shape of the chair does not suit my body, and its lack of suspension means even a small crack in the pavement is enough to cause severe joint pain. Instead of the burden of the cost of the chair being shared by all Australian tax payers, now the cost will be only on myself and my family. I am on the disability pension and my husband is on the carers pension as he is my full time carer, and can only work from home for 0-20 hours a week, depending on how much care I need. Without this chair I will need a lot more care and he will be unable to work very much at all, meaning we will have even less income. Using this chair has meant I can actually engage with life, be an equal partner in my marriage, leave my home, experience significantly less pain, safely be left at home alone for short periods of time and generally feel like a whole person and a genuine member of society. I will lose all that when this chair is taken away and I’m so scared.

The $50,000 goal is how much the chair base will cost ($41,000) and all the pieces that go on it like cushion, backrest, headrest and armrests.

If you’re reading this and feel moved to help, please only donate what feels good to donate, if the amount you choose feels like a stretch or makes you anxious please don’t donate it, but if you can give anything at all please know you are helping give me a whole life and I will be so deeply grateful.

ps. If by some miracle the NDIS changes their mind and pays for the chair we will of course make sure everyone gets their donations back! We haven’t linked a bank account yet to make sure that the money stays with go fund me and is easy to return.