Indulge Me….

If you came to this post expecting to read another rant about the state of the storage industry or an attack on this vendor or that vendor, I'm afraid that you are going to be disappointed. This is a purely indulgent post by Martin and not a 'Storagebod' post.

Like many people, I have many roles in this life and you have got to see a fair amount of them talked about here and on Twitter but probably one of the most important of them is 'Doting Daddy' to my little girl. Like most parents, I am very proud of my kid; she's funny, bright, caring, loving; to all intents and purposes, she's special! But she's even more special to us for a couple of reason; firstly she's a surviving twin, we lost her sister at 26 weeks but secondly she has a condition called arthrogryposis. 

Now I don't blame you if you've never heard of it; it's not the most common condition in the world and it's an umbrella term which covers a number of conditions which present in similar ways but are unrelated. But in simple terms, it is a condition which affects joints in various ways; it can affect a few joints or pretty much all of them. In Meggie's case it effects all her limbs. There is no cure or reversal and a combination of therapies and treatments are involved; physio therapy, occupational therapy and indeed orthopaedic surgery have all had their place and will continue to their place in our lives. Wheelchairs, splinting and calipers are all part of the paraphernalia of our lives.

But apart from the physical disabilities, she's just a normal little girl obsessed by reading, robots, aliens, computers, Star Wars, fast cars, guitar-based music and the colour pink! 

Still if I look back nearly nine years ago, when she was born early and in special care, with a pair of shell-shocked parents; grieving for both a lost twin but also for the surviving twin wondering what life was to bring, I am quite frankly amazed that we are where we are. One of the reasons that we are where we are is a pretty amazing bunch of people who founded a charity in UK called The Arthrogryposis Group, lovingly known by it's members as TAG!

We were put in touch with them very early on and then just a few months after Meggie was born, we went to their annual get together; TAG conference. TAG conference changed our lives and outlook; kids screaming around in their wheel-chairs, causing mayhem and mirth, grown-ups who were just getting on with their lives, an Olympic Gold Medalist and people who we didn't have to explain anything to and just took us in.  

Meggie describes it as wheelchair world, it's the one time when she doesn't have to feel different to all her friends; she can just get on with being her, she doesn't have to explain what she can and can't do…they already know.

TAG doesn't just provide Conference, it also arranges an Adventure Camp for Teenagers; a week where everything is arranged around them and a week where they don't have to feel guilty that they are holding their friends back or that activities are having to be specially tailored around them. They are just like everyone else! 

Also TAG has been instrumental in getting multi-disciplinary clinics set-up throughout the UK so that this complex condition can be treated holistically and not just as a disparate set of symptoms; indeed, TAG was behind the first International Arthrogryposis Symposium where experts from throughout the world gathered to discuss the condition. 

And finally, TAG provides a place for people to contact each other and get support from each other. 

Obviously, all of this costs money and this week-end, TAG is fortunate to be the subject of the BBC Radio 4 appeal; please tune in if you can or listen on the BBC website. And if Storagebod has ever made you laugh, scream with anger or even taught you something; perhaps you could consider giving something to TAG…

Thanks for reading…..normal service will be resumed soon!

Martin