Wednesday 25 January 2012, what an evening to be at Anfield! The Carling Cup, Liverpool the most successful club in its history and a chance to be a part of one of those Anfield nights. The 1965 European Cup Semi against Inter Milan; The 1977 European Cup Quarter-Final against St Etienne; 2001 UEFA Semi-Final against Barcelona and the 2005 Champions League 2005 against Chelsea. All wonderful nights in Liverpool’s history and it makes me smile to think about those nights, but beating Man City to reach the final of the Carling Cup, our first of any kind since 2007, meant I had my own ‘I was there moment’ as part of LFC’s history.
Sometimes things happen for a reason. On the way back home from Liverpool, Karl, my friend who I attended the match with, gave me some duff information regarding our reserved ticket seat numbers on the train. With recent experience of having to stand from London to Liverpool (the QPR game), and partially on the return journey when the train was declassified because of the weight of numbers, I was not in the mood to do so again and challenged the lady who I thought was in our seats to move. She steadfastly stayed in the seats with her daughter stating that “they were theirs”, when I heard Karl mumbling from behind me admitting his mistake. I ignominiously retracted my accusations and slid into the seats on other side of the table. I think I apologised… at least I hope I did and sheepishly introduced myself, to Stacey and her daughter Charlie who introduced themselves to us.
Stacey asked whether we went to the match last night and I showed her the video I had taken on my phone of the post-match celebrations. It turned out that she is a life long Red, born in Liverpool. Karl enquired why they were going to London which led to one of the most fascinating conversations I have ever been a part of. They were, Stacey explained, on their way to Great Ormond Street Hospital to see their doctor as Charlie was a Tourette's sufferer.
I’d seen the occasional programme on Tourettes and the over riding memory was of people swearing uncontrollably (which is called Coprolalia) because of some sort of imbalance in the brains set up, which is only in a minority of sufferers. There are famous sufferers like Everton’s Tim Howard, but it doesn’t scare one like cancer or such diseases I guess because one sees it as an illness rather a disease. It was hard to imagine that Charlie was suffering from anything because she is a delightful child and comes across as happy as any normal healthy child of her age which was astounding when Stacey explained about Tourettes.
Looking back, she explained after I asked, the first signs of the problem (physical tics) was 6 years ago when Charlie was 3 years old. Because children at the age are so energetic she put in down to Charlie being over active and fidgety. Over the years her tics became more pronounced and was eventually diagnosed as Tourettes, a neurological disorder. Her mother says that at its worse the severity and the prevalence of the tics leave Charlie exhausted, not to mention her parents (and her sister, Lila) who obviously are with her through it all.
Great Ormond Street Hospital has a wonderful reputation for its work and treatment of children, but we wondered why they were coming to London for Charlie’s treatment? Stacey explained, that here isn’t a comparable hospital or the expertise in Liverpool, let alone in Chester where they now live, able to provide the expert treatment required to treat Charlie. Thus Charlie’s parents have had to stomp up the cash for their frequent trips to London, which I think is a disgrace that this is not been funded by the national health. I guess as we all know, being ill can sometimes be an expensive business!
Unsurprisingly, having gleaned a little bit of her character and determination, her imaginative mother has moulded the trips to London to include visits to museums and places of interests, so much so that Charlie says she loves London. In terms of Charlie, what I found astounding is that her speech is very smooth and doesn’t suffer any hindrance of a stutter or an erm and she comes across as ever so intelligent, although Stacey says that she thinks Tourettes may have hindered her slightly in terms of her ability to understand. All I can say is when she does catch up watch out world!
After saying good-bye, I went home and have tried to learn a little about Tourettes. I learnt that over 300,000 people in the UK suffer from the condition which can be extremely uncomfortable for the sufferer. I cannot explain how listening to Stacey and Charlie moved me to want to learn more and about the condition and provide Stacey with a platform to write something about what they are going through and some of the events she is taking part in to raise awareness about the condition and how Charlie is getting on. Hence this blog.
I also learnt that the view that we have about Tourettes is not altogether right and their needs to be some form of re-education to change peoples understanding of the condition. Therefore, Stacey will be writing a summary of what the family has had to deal with and how Great Ormond Street Hospital has helped Charlie and her family cope and understand.
I would be happy if we can help Stacey and Charlie in their quest to provide awareness and support to what can be a very debilitating condition.
Kop Post
In these current times of negative news about LFC and things connected to the club it is reassuring that we can bring you awareness and positive knowledge of such a worthwhile cause.
ReplyDeleteWe all love our football and sometimes forget the ongoing issues that many of our fans out there face daily.
It is an honour to be associated with trying to help bring about the awareness of the condition Tourettes and would like to think our blog site will give at least some fans the chance to learn through Stacey that it isn't as negative a condition as portrayed in the public domain.
Our hearts and constant thoughts on this website go out to all LFC fans and general fans of football that continue to love our sport through any sickness and conditions which they have not complained about but just continued fighting daily.
We will continue to support all worthwhile causes like Tourettes and hope it continues with bringing the deserved awareness.
Look forward to reading Stacey's summary and wish her and her daughter Charlie the very best for the future.
Well said dedlfc,
ReplyDeleteVery touching, amazing how people connect with the love of football for that matter, but when you look deeper, not matter what hurdles life throw at you, it’s the little things that keep you going.
I can understand frustration, and that local hospitals don’t have the comparable hospital or the expertise, and Stacey and Charlie have to travel to London, thus costing money to travel and time, but hopefully they are in best hands.
I for one was a long term patient at Great Ormond Street Hospital, and they do have some of the world’s best doctors in hand for children, so hopefully the journey is worth it for the best care, treatment and advice.
I also look forward to reading Stacey's summary and wish her and her daughter Charlie the very best for the future.
I think dedlfc really captures how I feel about this, as did KopPost in the original email. Only I saw the faces that were being pulled, and the mufflings under the breath along the lines of "I want my seat", well they're gonna have to move" and so on. But in fairness, I think once we gazed over at Charlie, I think the fact that she looked as if she couldn't care less, kind of put things into perspective. Stacey also kindly and pointedly advised us that there were indeed a number of seats around us that had neither been booked or occupied. She also had to say more than once that she had booked her seats - I think Victor was just being unreasonable - reminded by the recent event of having to stand outside the toilets for a couple of hours having paid £70 for his train ticket!
ReplyDeleteBut I have to say that like Victor, I found it fascinating to learn about Tourettes - I didn't even know how to spell it until after the trip when I looked it up on the internet!
I recall feeling really shocked when Stacey gave an account of the symptoms of Tourettes. There I was thinking that it was just a mild nuerological disorder but that resulted in a bit of swearing that all of us at some point may have heard someone joke about in reference to Tim Howard, or to a colleague that swears a lot. But little did I know that such a minute number of people manifest this disability through the repetitive swearing.
Stacey told us about the suffering brave little Charlie had been through on a regular basis and I really respected what the family must have been through, even now when embarkiong on a kind of voluntary ambassadorial type role.
I very much hope that, whilst we all recognise the current constraints the financial climate has created and our own commitments to a charitable cuase, we can support this very worthwhile cause in our own individual way.
Victor and I have met some really amazing people on our trips supporting Liverpool - on our previous trip, we met a lady that was a charity worker in Haiti and who could barely maintain a dry eye when telling us about her voluntary experience off her own steam but supported by the Methodist Church. Without question, I offered her £20 towards her work which she refused outright, so I placed the money in her hand, I enched her fist, listened to her promise that the money would be used for the cause. I told her that my mum had recently instructed me to give £10 to the Disaster Emergency Appeal for Haiti and I was just carrying out her instruction, albeit more directly.
Like dedlfc says, I wish Charlie, Stacey and the family, the very best.
Very interesting! I'm glad you had a good journey and insightful people to talk to! It makes an outing to a game even more of an adventure, talking to people on the train journey there and back! If only my few train journeys were quite as exciting!
ReplyDeleteMy limited knowledge of Tourettes comes from a feature than Radio 5 Live did recently - they had a sufferer speak on-air about the condition, and they explained only about 15% of people with the condition actually swear. The lady speaking on air was incredibly articulate and intelligent and interjected the word 'biscuit' a lot when speaking. After a little while you could hardly notice as it was easy to tune out as a listener to the words that didn't belong, and simply tune into the content of what she was saying. That said, the difficult thing, as commentors say above, is the physical tic that goes with the 'words', which can make the sufferer exhausted.
I did see an earlier documentary on one of the main TV channels, first screened a few years ago and aired again more recently. That focused more on severe sufferers who swore and had severe physical tics. The thing that really hit me about that was the improvement recently in awareness and how the life chances of children growing up with it now are far better than they were - the sufferers growing up decades ago now have so many social difficulties now, not least because they were so misunderstood as children and didn't do brilliantly in their education because of that. Really really sad.
As comments above express though, there is still a long way to go (in terms both of research into the condition and support and understanding for sufferers severe and mild), and yes I absolutely agree that train fares should be reimbursd or at least subsidised by the NHS if necessary (I don't think DLA rates are enough to cover extortionate train travel from Liverpool to London and back!!).