A week in the Seat.

My son is 10 years old and on 15th August 2013 he took his last ever steps; he walked into the pool of our dream hotel on our favorite island of Tenerife and that was it, a little pain from an unknown bang and his frail femur bone snapped. Now, a broken femur isn't a cause for massive alarm in a 'normal' child but dom suffers from a far too common form of Muscular Dystrophy called Duchenne, it's a fatal muscle wasting disease and so far the only help available is steroids, which in a cruel twist have an adverse affect on the bones causing Osteoporosis.

To see pics and videos of my week please visit https://www.facebook.com/groups/254908357966777/?fref=nf or search FB for 'week in the seat'.

So here we are a year later; I've not done any fundraising for a while as adjusting to this new life has been somewhat of a challenge for the little guy and the rest of us and I've never raised money for something for dom but after seeing how some people can be to him, staring, talking to us to ask him things, tutting that he is taking a space on the bus that a pram goes in, getting verbal abuse for asking car drivers who have parked on the curb blocking his path, people taking the disabled bay to save walking a short distance, children teasing him and taunting him with comments like, 'at least I can get out of a chair, your stuck there!' and probably the most upsetting was a child recently kicking his wheelchair as dom had 'dared' to venture onto a football pitch. I want to get a glimpse of what he lives through, I know it will be hugely different for me both as an adult and safe in the knowledge that I can get up if I needed to but I still want to try to understand.
OK, that's the why and part of the 'what for', the other part is to collect sponsorship for a hot tub for dom, we visit Little bridge House, a wonderful complex run by Childrens hospice South west and dom just adores going into the hot tub, the weightlessness is a huge relief to his bones and muscles, we are not after a beverly hills style jobby, just a simple one to go in the yard outside his room for him and his sisters to chill in, well gently simmer!
What I am going to do...
I shall be in the chair for every waking hour, with my legs disabled but 'get outable' should a medical emergency occur, which, in our house isnt a rare thing these days. I shall be off work so will be trying to go fishing, shopping, the pub, taking the kids to the parks and attractions.....all filmed on a Go-Pro style cam (the cheap copy from Aldi - it does the job!) attached to the chair and reporting here each evening to post how I get on. If anyone wants me to try to do something then feel free to post it and I'll give it a shot too.
  • helen griffin 
    • £5 
    • 82 mos
  • Sue Bond 
    • £10 
    • 82 mos
  • Mr Escott  
    • £10 (Offline)
    • 82 mos
  • Anonymous 
    • £10 
    • 82 mos
  • Anita Higgins 
    • £10 
    • 82 mos
See all

Organizer

Dominic Stacey 
Organizer
Exeter, South West England, United Kingdom
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