Sunday, 18 August 2013

Why on Earth? Part One

When I decided to take on the challenge of trekking 186 miles in just seven days I don’t think I quite realised what an enormous challenge it was going to be. Following three training weekends totalling nearly 100 miles I am now fully aware – it’s going to be bloody hard.

A number of people have poked, prodded and firmly suggested I blog about the event, so this is that blog. I guess I am writing this more as a diary for posterity than anything else, so that I can remember the lead up to the walk and of course the event itself.

So the most logical thing to do is remind me, and you my dear readers, of who I am doing this for. The why will come in my second post. Those who have been good enough to visit my Just Giving page will have already read the below, but for the sake of those who haven’t, this is written by my good buddy Rob on behalf of him, his wife Annabel, and of course their daughter Thea, about the Charity I have chosen to support:

"Shooting Stars help care for children with life limiting illnesses - ie they are unlikely to live past 18. Our daughter Thea is now 18 months old and suffers from a rare brain condition called PCH (or pontocerebellar hypoplasia for short). As far as these things go it's a real humdinger - the part of her brain that has atrophied (stopped developing) controls pretty much everything the body does as a matter of course; coordination, learning, speech, even the ability to swallow and regulate breathing. Unfortunately this means that day to day life is a real struggle for Thea and as such her life expectancy runs to only a couple of years.

“Despite all this she is the most extraordinary, determined, inspiring, energetic, stubborn little girl you are ever likely to meet and of course brings an enormous amount of joy to our lives.

“Shooting Stars support us in that one of their carers comes to the house every couple of weeks and looks after Thea while I take a break. As a parent, looking after a child with a life limiting illness can be physically and emotionally draining, and so this kind of respite care is phenomenally helpful and makes a huge difference to our lives. In addition to this we are able to use the facilities at the Shooting Stars hospice where they have an amazing range of therapies available as well as rooms where parents can stay for the weekend while their children are cared for on-site by experienced nurses and staff. Again this is just a magnificent resource and it's really only when you visit the hospice that you start to appreciate the scale of the phenomenal work this charity does.

“Thea is still very small and so much of the care we receive is aimed at us as parents. One of the things that I love about Shooting Stars is the work that they do with older kids, and particularly teenagers. They allow these young adults to LIVE - to escape their parents, play video games, hang out with their mates, all the normal stuff that is often hard for them to do due to their respective conditions and the medical necessities that come with them. Our carer told me a great story the other day about a trip they put on for a load of teenagers to Brighton. The minibus pulled up and they all got out and straight away they all took off in their wheel chairs in different directions, determined to leave the adults behind, to have some fun, to be mischievous; classic teenagers, despite all their problems. I love that spirit and I love that Shooting Stars gives kids the chance to do this kind of thing.

“Everyone who comes under the auspices of shooting stars has one thing in common - that the time we have left with our kids is short. This charity helps us and many, many other families make the most of our time with our beloved little rascals, whether it's through active therapies and the use of amazing facilities or through support and rest and practical help. And that is a beautiful thing."

Makes for quite hard reading doesn’t it? And yet is strangely uplifting at the same time. It fills me with admiration for Rob and Bells and how they cope with a situation that must be so incredibly hard – and I’m glad that there is a charity out there that helps people in their situation.

I cannot claim to be a Saint, and say that I am doing this walk purely to raise money for Shooting Stars and do my bit for Thea. I have my own, far more selfish reasons too. However, I think when I’m done and I look back on this, it’ll be the fundraising, and the knowledge that the money donated is going to a worthy cause, that will give me most satisfaction.

No comments:

Post a Comment