This blog post was written on the day of Neil's death by his brother Matthew.
It is in a cloud of emotions I write my first and only entry on Neil and Louise’s blog.
This story began what feels like a very long time ago with Neil being diagnosed over a year ago now with motor neurone disease, therefore this particular story was only ever going to end with the passing of Neil's life.
It is with a very numb feeling I tell all of you that have been so caring and supportive that Neil passed away at 11:15 a.m. today.
My very brave brother was calm and at peace when he passed away, yet this was far away from what he endured in the last five days. Neil had such lust to be with his family that letting go was the hardest thing I have ever had to watch anyone do. It is such a relief to know that he no longer has to go through the daily torture and Louise and the rest of his family and friends can rest now in the knowledge that Neil was without a doubt so humbled by the care that everyone showed him.
Neil has left a huge void in so many of our lives. Please take with you the reason for this is that his amazing character couldn’t help but leave an impression and his passion for life always outweighed whatever he would have had to go through at his end.
With the end of Neil’s life now here it is, as it has been all the way through, in stark contrast the beginning of his son Oscar’s life. It is at this point I feel it poignant to remind everyone the reason Neil and Louise began this very publicised journey. That is to raise awareness of this forgotten illness and fight to find a cure for not only Oscar but any other person who may one day have to face this.
As a final word on behalf of all Neil’s family, I would like to thank all his nursing staff, doctors, family and friends, and all the people that extended Neil the best emotional relief he could have been given, that was your kind words and love.
Love as always
Neils family x
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