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

Past, future and present

February 5th, 2018

So my second attempt at this post, reason – I am so busy I do it in bits, forgot to save it and windows rebooted, #epic failure. So here goes!

Exciting times have been and are coming. What have we been up to? Getting on the news twice in one week. Firstly the premier Inn saga, this for us cast a big shadow over our invitation to meet Princess Anne. The premier Inn situation is ongoing and in true style my wife has the bull by the horns and isn’t letting go. In true making memories style we didn’t let this spoil our London trip totally. We had the honour of meeting Simon and Emma Adams, Simon is an MND legend now latterly living on technology. It was great to meet them and swap stories and chat about drones. We are keen to meet up and do some flying and spend more time together as two MND families.

We got to meet the Princess Royal who heard about some of our achievements also thought our home village sounded windy, I refrained from telling her it is most mornings. We also met Jeremy Vine; Liz admitted to him she didn’t know who he was. However I did and through Liz asked him why I had been on most other things but not his radio show? After he had heard about the premier Inn along with some things we had done he said it was a distinct possibility we could get. Then he asked us to do an interview for social media, featured below.

In my last post I mentioned a marathon, well not only am I opening the Hornsea 3rd marathon but I am doing it, pushed by my Marie curie nurses. So anyone local is welcome to come along on 8th April and support Marie curie or if not, maybe buy a daffodil this month to support the great daffodil appeal, you may be lucky enough to spot us on their advertising.

I also spoke about a spot more Abseiling; this is down gaping gyl pot hole approximately 100meters deep with a rope change in the middle. Why you say? This time to support cave rescue and to fund a trip for a similar family to ours to the Bendrigg trust in Cumbria, featured in our Masonic charitable foundation video series.

So that was a little past and future but just to prove life can be even more difficult than just MND, here is a summary of our weekend. Saturday – fabry’s conference in Salford, for us most of the way along the m62 which was closed until 7am that morning, the night before we decided not to go. 7.30am Liz decided we’re going, 11am we arrived just in time for coffee. This was a very educational session and informed us of new treatments and even a cure in the form of gene therapy. This however can’t help me of my mother but it can save Lilly and Poppy who also have this extremely rare disease. We got back home around.

Sunday – big day for Poppy and even bigger than I’d planned. 10.30am we went to Derby about 2 hours drive with 2 girls not knowing why. We arrived to let Poppy see her 5th birthday present, a 5 week old beagle puppy that we collect in 2 weeks. Briefly please spare your thoughts on this till my next post in a week or so. I sat in the van while they met the puppy due to accessibility issues, 20 minutes later they came out and I got to meet her too. Off for Sunday lunch, err no; the battery on the van was flat. 1hr later the rac man comes and soon jumped us off, lunchtime , err no, Poppy had a very sudden migraine followed by vomiting and then to sleep, alarm bells rang, my carer drove while Liz checked her breathing. Once at a+e she had come round. After examination she had passed out due to the migraine. That was scary. Lunchtime was now dinner and we arrived home at 9.30pm not the day I planned but thankfully Poppy is back to normal

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