"Awareness is empowering" - Rita WilsonConfession time. I'm absolutely SEETHING at this point. I'll explain why shortly, but in the meantime, I want you to have a quick glance at the following links...
http://youtu.be/kUhm0nkw47Y
http://youtu.be/EwFUaVcleSk
http://en.wikipedia.org/wiki/Rett_syndrome
I ask you this very simple question. Is it wrong to want to make people aware of a disease that most people won't have heard of (in this case Rett Syndrome)? Is it wrong to love your child so much that you would do anything to find a cure, some respite for her suffering?
Some people would say "yes".
I have a vested interest in this. The girl featured in the two YouTube videos I posted is the daughter of a very close friend of mine. She won't mind me saying that she has been through some total crap in her time. Bad as you can imagine. But what she's going through now, no-one should have to go through.
I can't possibly explain the things that Melody has had to go through in the 4 years since she was born. One of her more recent operations was to remove her bowels. This is JUST to keep her alive, not to cure her. At the moment, there IS no cure. This little girl, who I bounced on my knee when she was a few months old, making her smile at me...
So when Karina puts videos up of Melody's condition, in an effort to raise awareness and raise funds for Rett UK how can anyone criticise her for doing so? Well, people can. And have.
Two very spiteful people called Mr & Mrs E (that might be their initial, it might be their highest GCSE mark, only I know) complained to a local newspaper after they ran an article on Melody's videos getting bad press. That link only has one of their comments on the thread. Mr E wisely removed his after getting bombarded with complaints; Mrs E has never been wise, so has left hers to be viewed by all.
Allow me to explain. This couple are nasty. They are the type of people to bully and harass but somehow try to make it sound like THEY are the victims. All the while they're happy to sit at home on benefits, pumping out kids (they're going to try for another one within two years, as I heard the 'delightful' Mrs E exclaim last weekend).
Oh yes, I know this couple. They are the ones behind a campaign against me, accusing me of being a bully, yet they were the ones that helped set up a MySpace page slagging me and my family off, and more recently a Facebook page too, doing much the same. They are the poison within Croydon and this is a step too far.
If they read this, I want them to understand one thing. I don't like them. Mr E is a pious, rat-faced, buck-toothed, vicious little wart who is a walking waste of precious oxygen. Mrs E is a cock-juggling thundercunt. And when they see their Facebook friends list dwindling over the next few days, I bet they will sit there and wonder why.
Cretins.
No-one should EVER be intimidated into stopping trying to help another person. Moreso when it's a loved one and especially when it's a child.
I hope anyone that has read this will forgive my rant but it was therapeutic. And if I've helped raise awareness of Rett Syndrome to others, then I'm glad.
As I briefly touched on on Twitter, I thought I'd give my opinion seeing as you asked for one.
ReplyDeleteIs raising awareness ever a bad thing? In this case I don't think so. Like I said on Twitter though, I personally prefer awareness raised by blog posts like this one, rather than videos of children in distress.
I never like those NSPCC adverts on the TV because I don't like to see those poor kids, especially when I don't feel like I'm in a position to help. Yes I could give my £4 a month or whatever but it still doesn't help.
If I give to charity I much rather give to family and friends who are raising money for causes that have touched them or someone they know.
I've finally watched the videos now (the two you linked) and I think they are a good way of raising awareness, however I still need someone to tell me they are there in the first place, which you did.
As for the videos on Facebook, obviously I haven't seen them so can't comment fully but personally I wouldn't want to see them. Maybe that makes me a coward. Maybe that means I like to dodge difficult issues.
In cases like this I think I prefer to be told, rather than shown. If I saw a video for every illness and disability effecting children out there I probably probably wouldn't be the optimist that I am.
I think everything I've said is rather pointless because rather than someone being challenge by the video, it sounds like they've just used it as an excuse to act like a prick. Kudos on giving me a new favourite phrase though "cock-juggling thundercunt". :D
So anyway, by all means, do a sponsored walk/silence/bake-bean-bath-sit or something, and I'll back you. :D
As an addendum to my blog: http://www.bbc.co.uk/news/uk-england-london-14084422
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