Iʼve raised £10 to Enable me to face the daunting prospect of my condition deterioating by making my future a more bearable one. Muscular dystrophy wont win !
- Hull
- Funded on Thursday, 29th July 2021
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Story
Where to begin...Well 16 years ago at the age of 40 I had a massive shock. For the previous 39 years it was thought I had been born with cerebral palsey .A condition that is caused when the brain is starved of oxygen at birth.
Well that was until the day I went for a routine visit to see my GP which ended up being a series of tests for a muscle disorder. I will never forget the experience of having a muscle biopsy with the amount of pain and the image of blood pouring down my left leg.
Anyway ,A long 2 weeks later I was dealt the devastating blow that what everyone thought was Cerebral palsey was in fact a very rare form of Muscular dystrophy . A horrible condition that gradually eats away at all of the Muscles in your body making you weaker and weaker to the point where there will be no more days to get weaker and I am sure you know what I am saying when I make such a statement ?
I remember sitting in the hospital that day feeling totally shattered and utterly devastated that I had this life affecting condition and nothing on this planet could be done to stop it slowly but surely take my life away bit by bit . It felt so unfair that I had suffered so much with what I thought was a non life threatening cerebral palsey to a cruel life threatening rare form of Muscular dystrophy after I had spent the previous 15 years caring for my first wife who had a severe form of Bipolar disorder that meant she was an inpatient of Mental illness units for the majority of out married life together in fact it was 2 weeks to the day after she finally walked out on me for good that I received the devastating news about my diagnosis. To say it felt like my life was falling apart is a massive understatement but I had no choice but to do what I have always had to do.. Battle on regardless!
So today I write this knowing that my condition is at a very advanced stage and every day I feel the little strength my muscles have left draining away.
Will you make the future days brighter?.
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A well wisher
Apr 4, 2021
Keep safe, keep strong xx
£10.00
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Rob Smith
Hull
You may recognise me from my appearance on BBC Breakfast and Look North for Yorkshire. I have been shielding for the past year which is hard enough in itself but add to that a rare form of Muscular dystrophy that has deterioted massively . Please help me to make my future bright