Making memories for our young family as we live with Motor Neurone & Fabry's Disease

Politics and Flying high

November 26th, 2017

It has been a while, as normal we have been super busy. In fact to be honest I don’t have a clue where to start. Since mount Snowdon we have done several separate photo shoots with Marie curie, one was for their latest campaign and is featured below. While filming Snowdon I also did some separate filming for a story video which is due for release anytime now. A couple of weeks ago we were photographed as a family for their annual daffodil appeal early next year. Filming and photographs have now become second nature to us as well as letting the media in to our lives. Raising funds is important but the need to raise awareness is greater.

Raising awareness I feel is vital to ensure that one day we get a cure, many people just simply have never come into contact with mnd, please remember anyone can get it at any age. This brings me to the parliamentary reception in London we attended to help raise issues relating to the cost of mnd with mp’s. Can I add that out of Yorkshire only one mp attended. All had gone well , we had got there the day before and went on the eye, bonus as Liz got on for free and our journey on the tube had gone really well. The return journey however was a different story, we were a little late leaving to get our train, fair enough let’s get a cab, err no, despite black cabs Having ramps it wasn’t a great surprise that my chair wouldn’t scale the near cliff face of a ramp, it was déjà vue mount Snowdon again. Leg it to the tube, got on ok, couldn’t get off, delayed everyone by 10 mins, had to get of a further 5 stations down the line to eventually get back on to the station we started at, then I was giving the status of mip, see if you can work that out, final leg was on a tube to kings cross that didn’t even stop there but as I was an mip they made it, we only arrived 2 hours late for our train.

We managed to arrange a meeting with our local mp graham Stuart, who we met and had a productive meeting. We explained about extra costs as well as the need to scrap reassessment for pip for terminal illness.

Just this weekend Liz and I attended the mnda regional conference at which we presented to the attendees along with Cathy Soreny, it was well received. It was a great chance for networking and a great excuse for a chat. We, I say we but really it was Liz, volunteered us for another presentation about intimacy in mnd, so watch this space.

Back to filming now, we receive help from the Masonic charitable foundation and as a result of this they asked if we would like to go to the Bendrigg trust in Cumbria. It’s an outward bound centre for the disabled. Of course we would lol. One condition – we can film you all. The Masonic charitable foundation recently funded aspects of the new acorn building. The results of filming will be 3 five minute videos for social media in January I believe.

So what did we get up? Canoeing, zip wire, Abseiling, camp fire, tube slide, archery, rock climbing, indoor caving and swinging. I was able to do everything as were the girls. We had an amazing time and met Johnny and stig. We put our own video together below. They say things come in 3’s, so here is ours, approximately a mile from the bendrigg trust we were forced of the road by post man pat, again you can see in the video. I hadn’t even got to the first activity when I acquired a puncture on my wheelchair. Fortunately for me the maintenance guys got me a new tube and off I went, thanks guys you were great. Last but not least, in the van to come home and it wouldn’t start, jumped it off to find we had no indicators or wiper. Thanks to the rac guy that sorted us out.

A massive thanks to the Masonic charitable foundation for letting us go, and to the bendrigg trust for giving us an amazing time, we hope we can come back soon.

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