I’m Lucy and I’m 19 and I have multiple chronic illnesses. I began having serious problems at the age of 12 but have had symptoms since birth.
I spent most of 2014 in hospital with various tube and lines to keep me alive. I spent 1year being tube fed due to gastroparesis and then 1 year on TPN being fed straight into my bloodstream via my Hickman line in my chest. This was due to my whole digestive system failing but for some unknown reason this has since improved.
Over the last year my health has started to deteriorate after two years of being fairly stable. I’m January I suddenly has severe pain in my right hip. We now know after 11 months what it is. It can’t be fixed without surgery and due to my EDS this makes surgery very risky.
Since August I have been experiencing progressive weakness and loss of sensation starting in my left hand and spreading to my whole body. I now have very little feeling in my legs and I have frequent falls. This currently doesn’t have a diagnosis as doctors cannot agree on the cause. I am reliant on my wheelchair when I am out of the house.
Due to the progressive weakness, I struggle to go out on my own. This is because of pushing my wheelchair for long distances and up hills. Due to this I would really benefit from a Smart Drive MX2+ Power Assist for my chair. This would allow me to go out on my own without having to worry about the distance and the level of the ground. It is small and can easily be attached and unattached to my chair by myself. It would give me my freedom and independence back.
The money raise will all go towards buying a Smart Drive MX2+. We don’t know what the future holds and how far the condition will progress. We are waiting for more invasive testing but we have been told that I am unlikely to improve.
Thank you in advance!
My other conditions that aren’t related are;
Classical Ehlers Danlos Syndrome - my body has faulty collagen which is like glue. My joints are very unstable and dislocate very easily. My skin also heals very slowly and scars stretch open. This makes surgery risky.
Postural Orthostatic Tachycardia Syndrome - my body can’t maintain my blood pressure or heart rate. When I stand up my blood pressure plummets and my heart rate jumps up. It also causes sensitivity to lights and noise along with other problems.
Gastroparesis - stomach paralysis, can’t eat large amounts due to pain and bloating
Scoliosis - my spine is curved causing pain
Systematic Dermographism- causes allergic reactions to pretty much anything.
A breathing disorder - no official name, my brain gets confused if I have enough oxygen or not
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