Living with an illness such as ALS it is important to find peace on a day to day basis. This applies to me, and of course to everyone in our family. As you may imagine, it is incredibly tough.
My colleagues and friends at Vodafone came up with an amazing idea which took our children out of their normal lives and which will give Jane and I an incredible experience. It was all made possible by the generosity of some great people.
Sebastian played golf at one of the best courses in our area, The Grove. Valentina did a high ropes and climbing adventure at Go Ape. Sebastian played golf with Tony, Adam and Simon; he was given his own caddy for the day in the shape of Spencer – what luxury, but don’t get used to it son.
Valentina went with Francesca (a similar age), Meryl and Richard.
The idea for and organisation of the event was by Bindi and Hannah.
It was financed by the following people from their own pockets and by the generosity of The Grove and Go Ape. Thank you to Christine, Gee, Clare, Shelley, Meryl, Hannah, Bindi, Brendan, Lars, Lucy, Welton, Trevor, Sally and Mailan. While I know most of the people above, I do not know everybody. Our whole family was very touched by the idea, the day and of course your generosity.
Valentina and Sebastian were both very excited when they came home. It’s great to feel special, and Valentina and Sebastian knew it was all about them. There were tales of the adults’ golfing and adventure exploits, some of which we can keep to ourselves! They were exhilarated.
Thanks to the thoughtfulness and efforts of everybody, I will soon be enjoying a flight in a light aircraft accessible for disabled people, and Jane will be able to enjoy the facilities of the top spa in the area.
It cannot be easy seeing your father struggling to walk, or finding it hard to pick up a cup with fingers which are bent. Likewise, it cannot be easy to see your mother trying to cope. There is huge frustration for the kids in not having the dad they have before. A day of fun, a special treat, fun when Hannah (and her lovely daughter Lucia) and Bindi came home to our place. It came at the right time.