The First Post
Leigh's Syndrome - Your Help is Requested
The Old Hack has received a request for help from a young lady whose baby has recently been diagnosed with Leigh’s Disease. She has been told her baby is unlikely to live beyond the age of seven years.
The young lady in question has limited literacy skills, and is quite desperate to understand more about the disease and, above all, to be able to have some support from others who have been through what she is presently enduring.
Leigh’s Disease, otherwise known as Leigh’s Syndrome, is an incurable disease affecting the central nervous system and causing progressive degeneration of motor function, leading to certain death. Fortunately, Leigh’s Disease is rare, affecting just a very small section of the population.
The saddest thing about Leigh’s Disease, is that its victims are nearly always infants aged between three months and two years. Once a child is diagnosed, life expectancy can vary between about two and seven years, with a very few infants surviving until their mid-teenage years. Although special diet can prolong life expectancy, there is to date no cure.
The disease is genetic in nature and can be passed by both male and female parents, who may carry the rogue DNA without any prior knowledge or incidence of the disease within their immediate families. Should both parents be carriers of the disease, there is a 25 percent chance of offspring being affected by the disease.
If you or anyone you know is affected by Leigh’s Syndrome, or can assist in identifying a support network or information source, please contact me and I will pass the relevant information to the baby’s mother. If you are well-connected, please take just a few minutes to relay this request to anyone you know who may be able to help.
To endure the pain of having a child diagnosed with such a disease is dreadful in itself. To be in the dual position of being unable to communicate easily with others is unimaginable.
Please help in any way you can. Thank You.
Fame Academy
I was struck today by an item in the news concerning the proposed introduction of careers advisers to schoolchildren as young as seven years of age. I’m all for career-based learning and certainly as far as the Old Hack is concerned, a little career advice of any sort would have been welcomed in my early teens, before I discovered rock music, sex and alcohol. I may have made more of my life – who knows – though I have few regrets about the varied path my working life has taken over the years.
Seven, however, seems a little early.
It got me thinking about what career advice and work-based training may lead to in our schools of the future. Come with me, if you will, on a little journey to a school (Let’s call it Paddington Road Junior). The year is 2019 and the head is entertaining the new Education/Business Secretary and his entourage on a tour of various classes…..
“Yes, Lord Milliband. This is our biggest class, though we do try hard to keep the numbers of pupils down to double figures as best we can.”
“What class is it? This is train driving stage one.”
“Mind your footing here in the dark sir.”
“Why is it dark? Today’s lesson is about driving underground trains – we find that very popular at present.”
“Yes it’s partly the excitement of the unknown, but possibly more to do with the RMT now that Bob Crow has been made life president – two extra weeks’ holiday each year is a big incentive.”
“Yes sir, I do understand that industrial action is not part of the curriculum, but your department’s guidelines insist that we expose the children to all aspects of media coverage of their chosen careers..”
“Next door. Yes of course Minister….”
“The poor child who has just vomited was unable to cope with the gravity force of the rotation unit. We find this happens rather a lot I’m afraid, but if they will insist on enrolling for astronaut training…well we just have to respect their wishes – Your Equality of Opportunity and Human Rights legislation has ensured that, sir.”
“No sir, it’s true we don’t have too many girls in either the engine drivers or astronaut’s classes. It’s not that they are not given every opportunity and encouragement…”
“At this age, sir, we find our girls are often more interested in the pop idol or fashion model career courses, and I have to say we have the same difficulty in reverse. We recruit very few of the boys to these classes.”
“Yes, your lordship. These girls are on the course. They are taking their lunch break.”
“You’re absolutely right, sir, they aren’t eating. We do of course encourage good nutrition, but these girls have their hearts set on their career path and we have to put the children’s wishes first. We do insist they drink plenty of water, though.
“The itinerary for this-afternoon is to visit the Formula One racing driver’s track, weather permitting and then a quick tour round the flight simulator followed by a visit to the TV Studio, where Carol Vorderman is giving a talk about how to make money out of just about everything you do.”
“Maths and English departments? Why no, sir. We simply can’t provide the funding any more.”
Daily Mail columnists who live in glass houses....
I don’t want this blog to turn into an antidote to the Daily Mail, as much as I generally dislike that particular publication. I feel I must, however, add my voice to the critics of the latest homophobic rant by the Mail’s Jan Moir. In the unlikely event that you haven’t heard about or read her diatribe, she blames the cult of “hedonistic celebrity” and a “dangerous lifestyle” for the sudden and tragic death of Boyzone’s Stephen Gately.
Does she back this statement up with any evidence? No. She makes play of the fact that Gately and his partner, Andrew Coles, had invited a Bulgarian student back to their hotel and infers, without saying so directly, that the purpose of this invitation was sexual in nature, Cowles and the Bulgarian sharing a bedroom while Gately retired to a sofa in another room.
Whether there is truth in this allegation or not is irrelevant, for whatever activity may or may not have taken place it would seem that Gately was not a part of it. As a writer I have a fairly broad knowledge base and a pretty vivid imagination, but try as I may I cannot find any correlation between the death of a man alone on a sofa and the activities (of whatever nature) of two men in another room.
It seems to me that Jan Moir has exploited the tragic death of a young man to vent her own poisonous prejudices. It is quite possible that the full detail of Gately’s untimely death were, as Moir says, “sugar coated” – do we really want or need to know the nature of any private activity in the hours leading up to the death? Unless she can come up with a well-argued and substantial case that some specific activity or other was or could have been directly responsible for the pulmonary oedema which killed Gately, she should keep her nose out of other people’s private lives, and particularly their bedrooms.
But then again, Moir has antecedents for prevaricating on the sex lives of others. She ranted against Manchester Council for publishing a guide about sex for the over 50s – or - (Daily Torygraph 2008) on Lord Snowdon’s past sexual activity claiming, “Lord Snowdon is a thoroughly unpleasant little man.” She even seemed to criticise Joan Bakewell over her past affair with playwright Harold Pinter in a past interview for the Mail.
Maybe it’s jealousy. Maybe Moir doesn’t have a sex life of her own. I could speculate – but no, that would be cruel!
Goodbye - And Thanks for All The Duck!
Thanks to my wife for today's blog inspiration. Over breakfast, she pointed me to an article in today’s Daily Mail (Femail Section) by one Melanie Jones, entitled “Au Revoir to All That”.
Melanie and her family emigrated from the affluent Virginia Water, Surrey, to Tarn et Garonne in the Midi Pyrenees, South West France five years ago. In her article, Melanie bleats endlessly about the language, the culture, the boredom and the bureaucracy she encountered during that time and why she is so happy to be back in England. As she now claims the family has “hardly a penny to our name”, I doubt she has been able to return to Virginia Water, more likely a sink estate somewhere in Manchester or Glasgow – but I have no doubt the dangerous dogs, crowds of youths on the streets and bins collected once a fortnight are preferable to the incessant noise of grazing sheep and chirruping songbirds and the annoyingly tidy roads of rural France.
Melanie takes exception to the fact that the French seem to insist on doing things the French way. She can’t find the things she wants to buy in the shops. Her daughter uses French vernacular which she finds vulgar (close your ears, Melanie when those young men on the street corner start talking!). Children are allowed to behave like children. In a nutshell, France is so annoyingly – well – French!
Not content with slating the French, the English who have settled come in for a roasting, too. They are, apparently, of only three types. Type one Melanie describes as the BATs (British and Twisted). Melanie does not elaborate on the meaning of this phrase, but counts herself proudly among their number. The other groups apparently are the BACs (British and Clueless) and the BBs (Bubble Brits who live in isolation and make no effort to learn French or integrate with French society)
Maybe ‘twisted’ means believing that everything that has gone wrong with your experience is somebody else’s fault. That description would fit Melanie, whose house needed more work that she thought (having evidently failed to employ a surveyor or anyone with knowledge of building), whose (presumably) rural post office was at fault for not having the 32 postage stamps she wanted to send Christmas Cards to Great Britain (it’s not a French custom to send Christmas cards, far less to send them abroad), whose removal van was too small (Melanie proudly tells us that she speaks French – did she not think to ask?) and to whom it did not apparently occur that living in the Pyrenees mountains may mean cold winters. As to all her local restaurants serving nothing but duck, I find this very hard to believe in a land where food is so important.
I venture to suggest that among the many French delights on the menu, there was nothing to suit Melanie’s delicate English palate. Why is it that French restaurants insist on serving French food?
I have to put my hand on my heart now and admit that I have encountered the BAC category of expat more often than I would wish, and that sadly Melanie’s description has something of the ring of truth about it here. I can’t personally see much difference between the BACs and the BBs because in my view isolating oneself from the community of the country in which one has chosen to live is boorish, arrogant and ultimately destructive.
My experience of life in South West France could not be more different than Melanie’s. I work with British, French and Dutch co-workers, all of whom get along very well. I probably spend more time negotiating in French than I do in English and although there are still some French dishes which my English palate does not appreciate I have tried most of them. I love the richness and expressiveness of the French language and I enjoy the French way of life - but I remain proud of my own nationality, language and birth culture. I didn’t come to France to escape immigration in Great Britain – the thing I miss most here in rural France is the mix of ethnic cultures I enjoyed so much in North West London.
So maybe according to Melanie I am in a new category of BAF (British admirer of France)
I genuinely wish you every success and happiness in your life back in Britain, Melanie – but if things should go a little bit wrong from time to time, I implore you to use your experiences, look inwardly and ask yourself if you could have done anything differently.
To Pee or Not to Pee?
The Debenham's group in the UK has today launched a range of underpants for left-handed men. Titter ye not - pointing percy at the porcelain has been a difficult task for southpaws wearing the traditional Y-Fronts since their introduction back in 1935.
The problem has been that the opening allowing gentleman to release their appendage has traditionally been on the right hand side of the garment. Thus a task easily and readily performed by ninety percent of the world's men (who are right handed) has until now been an embarrassing feat of prestidigitation for those ten percent who prefer their left hand.
The situation is succinctly summed up by a Debenham's spokesperson, who explained: "Left handed men have to reach much further into their pants, performing a Z-shaped manoeuvre through two 180 degree angles before achieving the result that right handed men perform with ease."
The new range of underpants, from UK-based Hom, features a horizontal opening rather than the traditional vertical right-hand biased opening, finally giving left-handed men equality with their right-handed brothers.
Phew - what a relief!
Source - Reuters 23/09/2009
Stumble It!