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

It’s blog post time

August 29th, 2017

It’s blog post time again

I now have an appointment with ENT with regards to my trachy, quite quick, in September.  I have compiled a list of questions, I a few might be a bit silly, a teacher once told me providing its relevant there isn’t such a silly question.  I kind of figure as it will be the next part of my MND journey I need to be prepared.

It’s now less than 2 weeks to the abseil, Liz as ever is working hard to make it a success financially.  She has a bouncy castle, cake stalls and face painting organised but still has much to do, any help or offerings would be gratefully received, and all the funds are going to the MNDA and the fire fighters charity.  The MNDA is fairly obvious, we decided on the fire fighters charity because back in December last year 5 firemen from the Bridlington station went to Edinburgh to donate their voices so I could have a synthetic voice that sounded like m.  Other guys went too and I am extremely grateful to all of them, but as they were one group who stepped up at the last minute we thought it was rather fitting, also Humberside fire brigade are helping to make the abseil happen.

I understand that once I have a trachy, I will be limited to what I can do, really!!! People who know me from my younger days know I like speed.  Since mount Snowdon I have an urge to get into the book of Guinness world records, couple this up with jokes about pimping my ride.  There can only be one thing to do, make the fastest wheelchair.  With a few helping hands this could happen.  So watch this space.

If you can please come along to the Humber Bridge, Hessle foreshore for 11am on Sunday 10th September to support us or Donate at

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