I am happily married with a 19 year old son and living with a long term chronic medical condition called Elhers Danlos Syndrome (EDS) which is a connective tissue disorder. Connective tissue provides support in the skin, tendons, ligaments and bones. My condition causes me to have weakness and fragility in my whole body including my internal organs and blood vessels. Other related problems that I suffer from due to my EDS include Autonomic disfunction (POTS) Gastroparisis and intestinal failure. These are debilitating illnesses that have left me disabled and unable to eat or drink. I have to be feed intravenously through a special line (hickman line) that sits at the top of my heart. This is my lifeline which is also used to administer my fluids and all my IV medication. I am also in constant pain which is mainly controlled via my syringe driver (pain pump) which runs over 24 hours.
Earlier this year I was admitted to hospital with a major infection which led to me losing all my speech and movement due to having a transient ischaemic attack (TIA) I have regained my speech but my movement is very restricted. I can sit up for short intervals, but I cannot stand unaided or walk, so I'm totally wheelchair dependent now. To gain more independence, I would like to raise the money to purchase a power wheelchair, that I can use inside and outdoors so that I don't have to rely on somebody always being there to help me move around. I would also like a special walk in bath that will allow me to transfer with minimal help from my chair and wash independently, giving me privacy and dignity in doing so!
Due to my chronic conditions a basic power chair will not meet all my needs which is why I will have to purchase a more specific chair to meet all my requirements. Due to my feeding line and other complications I've been unable to use my shower room for over two years now so I have only been able to have bed baths. These two things will give me a better quality of life as well as improving my independence, so I would greatly appreciate any fundraising or donations to help us to reach my goal in purchasing them both and anyone who can share my page and spread the word.
Thank you for taking the time to read this page and for your support. God bless you.
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