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

I’m standing, well sitting really.

June 3rd, 2018

Well what a few weeks it’s been, in a nut shell – centre parcs, Beverley Westwood, nominated for trustee with MNDA, getting stuck in promoting the fastest electric wheelchair world record, followed by an exciting few weeks.

Firstly  our yearly trip to centre parcs at Sherwood Forest and this time we took our 4 legged friend Popcorn, this worked quite well and wasn’t as bad as we thought it might given she is a puppy.  The girls as always loved the swimming activities while dad got jealous of all the fun; no matter if nothing else I was good for bag storage lol. The obligatory trip to the Pancake house was a must where even I managed a full one.

I digress slightly to health matters but since my last trip to hospital in March my appetite has gone.  I barely manage one proper meal a day.  Thankfully I have my feeding tube which now gives me 1000 calories in my sleep, nom nom.  Calories and protein are being added to my drinks but I’m feeling the lack of energy none the less.

Following our trip to the mnda regional conference I have been nominated for a role as one of the trustees, voting starts on 6th June and I believe that there are 6 candidates for two places.  Could be interesting given my extreme personality in areas such as MND, not one to go by the rules lol.

Promotion for my latest challenge is well under way including a trip to Silverstone for fully charged live.  They have agreed to sponsor us along with

More information is available HERE

11th June sees my induction to the Masonic lodge all been well; this is something I have been looking forward to for sometime.  My father, grandfather and step father are or were masons so I am following a tradition.

Last but not least, our family holiday to Turkey.  Not the same place as last year but close, I am looking forward to hopefully not shivering for a week or so.  The girls love the swimming and the beach and best of all, I get to do nothing and it’s acceptable as apposed to doing the same at home gets me in to bother for being lazy lol. Popcorn is also going on vacation to boot camp for the duration to learn stuff I hope.


If you wish to support my latest challenge or know anyone that does, please donate here:



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