Langar Mass Skydive

Re: Langar Mass Skydive

Arlo Guthrie — Tue, 23 Nov 2010 10:59:56 GMT

[quote user="Caro Laithwaite VN"]thank you for the vet surgeon site[/quote]

As I always say, and genuinely mean, there is no need to thank me for these websites. I take enormous pride in the fact that the sites are (from the feedback I've had) useful. But at the end of the day, I am doing it to earn a living, and for that reason, don't feel my efforts deserve thanks.

I am getting a little less shameless about promoting the need to support children with epilepsy. As the parent of an epileptic child, I have been most shocked by the lack of understanding of the condition, both scientifically and in terms of how to manage it.

I find it quite annoying to be asked to give to charity. Not sure whether it is because I'm tight by nature, or because I'd rather make the decision about what I'm going to support, and don't like to feel pressured into it!

All the same, here is something I was asked to write about the experience of living with epilepsy, and why I think the Muir Maxwell Trust is worth supporting. I'm not entirely comfortable sharing something so personal, but then again, I think ANYTHING which helps raise awareness of this condition is worth trying. If you read it, thanks. If you read it and support Caro's skydive to raise money for the Trust, double thanks.

The first time our daughter had a fit, at about nine months old, we thought she was dying in front of us. It wasn't a passing thing: she hadn't recovered by the time the ambulance arrived half an hour later, or for some hours after we got to the hospital. That was followed by the worry of what caused it. A brain tumour? Thankfully, an MRI proved otherwise. But the first diagnosis was hardly more comforting. It was Dravet's Syndrome, we were told, a particularly catastrophic (their word) form of epilepsy which causes the child to progressively lose cognitive skills. We were sent away with rectal valium (we were living in France, and the French seem peculiarly fond of delivering medication up the bum), and told that we should administer it within 30 seconds of the start of another seizure, or risk Emily suffering brain damage. 30 seconds. It's not even enough time to go to the loo. Anyway, for more than a year, Emily didn't have any more fits and the original diagnosis was starting to look flawed. We began to relax. My wife even went to the loo, finally.

Then, out of the blue, they started again. This time, more frequently, settling into a pattern of about one a month. Again, we couldn't afford to take our eyes off Emily for a minute. We installed 'Emilycam' in her bedroom, so we could check she was OK on the TV without disturbing her. We moved back to England (living in France was proving too isolating). Then, last October, she fell off a cliff, metaphorically speaking. She went from having one seizure a month, to more like one a day, and sometimes ten in a day. Most of them are a bit of a blur. Except the one that happened in the middle of the high street in the local town, where we remained in the pouring rain, holding up the traffic for 45 minutes before the ambulance finally arrived. And the one at 3:00 one morning which failed to stop after she'd had the valium. The ambulance service couldn't tell us when they'd arrive. Since we'd been told 'brain damage if not treated within 30 minutes', I shoved her in the boot of the car with my wife, put our other child in the baby seat, and drove like a Palestinian terrorist to the local hospital, nearly falling off the road more than once.

Soon after, we discovered the Muir Maxwell Trust, a charity that supports research into childhood epilepsy, and families affected by it. The charity supplied us with an alarm system that sounds if Emily has a fit at night. Aside from the benefit of having our bed to ourselves once more (since falling off the cliff, Emily had slept with us for about nine months), it has quite possibly saved her life. I was woken by it one night to find Emily fitting, face down in her pillow.

Also thanks to work started by the Muir Maxwell Trust, Emily has now had a genetic test which has given a diagnosis of Severe Myoclonic Epilepsy Borderline (SMEB), a sort of cousin of Dravet's Syndrome. Some texts say the prognosis for SMEB is the same as that for Dravet's. But thus far, Emily seems to have avoided the worst ravages. Whilst 'a little behind' due to the amount of time off school, and the effect of the various drugs, she seems remarkably unaffected between seizures. Ironically, that is one of the biggest challenges of her condition. Most children that have as many seizures as she does, have them secondarily to some other catastrophic condition, like cerebral palsy. So when we plan for almost any aspect of her, or our lives, from something as simple as going for a walk in the countryside to the protocol her school needs to follow, we're kind of making it up as we go along.

If you stick your head in a tiger's mouth enough times and it remains on your shoulders, a tiger becomes less frightening. So it is with epilepsy. We've become quite matter-of-fact about it. Still, just beneath the surface, there are a hundred things to worry about. Daily, will she have a bad accident? Will she regress, and lose cognitive abilities? Will she be taunted at school? Will she ever be self-sufficient, even in adulthood? Worst of all, will it kill her. Epilepsy does kill, and not just through accidents and suicide, but because it seems the condition can cause the heart to stop.

Something like 70,000 children in the UK have epilepsy. 30,000 have uncontrolled epilepsy. 15,000, (of which Emily is one) have uncontrolled, chronic epilepsy. Even for those that achieve control, it usually comes at a price: the drugs have powerful side effects. You could argue that since the severe form of the condition affects so few people, it doesn't deserve support. On the contrary, it is by investigating the severe cases that the leading lights in this field believe that they will find the answers for ALL epilepsy sufferers, of which there are an estimated 60 million worldwide.

Re: Langar Mass Skydive

Caro Laithwaite VN — Mon, 22 Nov 2010 23:43:17 GMT

The poster a letter and sponsorship forms are now available even if you dont want to jump yourself please help by promoting it. If you message me your details l will get the letter and poster off to you to get up on your walls and pass round to friends.

Just giving is also set up and needs some boosting full details of the URL are in the letter.

Please remember it is also a thank you for the vet surgeon site as well as helping kids with uncontrollable epilepsy.

Many thanks

Caro :-)

Re: Langar Mass Skydive

Caro Laithwaite VN — Thu, 21 Oct 2010 15:12:06 GMT

Thanks Bob and yes will be making sure that is on the forms. It is set up l think automatically on the just giving site but will make sure it is there. Pity you can not jump anyone you could "talk" into going in your place? Friends, family, clients you name it we are not fussy

Re: Langar Mass Skydive

Bob Russell — Thu, 21 Oct 2010 12:38:15 GMT

[quote user="Arlo Guthrie"]

[quote user="Caro Laithwaite VN"]The idea is twofold 1st is to say thank you to Arlo for the site's & to raise money for a small charity that helps children with epilepsy as you may be aware Arlos daughter has this and it was felt that how better to say thanks for vetnurse and vetsurgeon sites. [/quote]

Extremely touched that you should do this in support of an epilepsy charity. As I said on the VN site too, no thanks necessary for these sites, after all, I have built them to try and make a living, so my motives are not entirely altruistic.

But regardless of my own situation, I do think epilepsy charities are important to support:

From Epilepsy Research - "Epilepsy is the most common serious neurological condition affecting more than 450,000 people in the UK. Every year official figures report about 1,000 people die in the UK as a result of epilepsy. This is more than the combined figures for cot deaths and AIDS. Studies have estimated that 500 sudden and unexpected deaths (SUDEP) occur in otherwise healthy people and the greatest numbers are among young people."

Epilepsy gets a fraction of the funding that AIDS gets, or breast cancer, which apparently affects the same number of people, I guess because it's just not a very fashionable condition.

[/quote]

Having been epileptic since my early twenties (following a head injury - probably the reason I became a vet rather than getting a proper job!) it is not fashionable or 'sexy' just a pain!!!

The more support the better!! I have abseiled from a water-tower for a local charity and thoroughly enjoyed it. Unfortunately working 6 days a week it is unlikely I will be able to join the jump. A good charity - worth supporting. Just remember to ask for names and addresses and permission to claim gift aid (tax relief).

Re: Langar Mass Skydive

Caro Laithwaite VN — Thu, 21 Oct 2010 08:53:39 GMT

Due to bsava messing up the planned first weekend in April 2011 very inconsiderate of them l may add!.

We are now looking at the 3rd weekend in April will know in the next 24 hours or so unless anyone knows of any big events on that weekend as well?

So come on folks we have one vet on board how about some more?

Re: Langar Mass Skydive

Gillian Mostyn — Sun, 17 Oct 2010 12:25:13 GMT

Good luck with it all and I hope it is successful. But there is absolutely nothing that would make me jump out of a plane. I feel ill just thinking about it.

Re: Langar Mass Skydive

Caro Laithwaite VN — Sun, 17 Oct 2010 01:05:52 GMT

Come on there has to be some vets and vet students who are willing to fall out of planes. I know there is at least one experienced D licence holder vet surely he isnt the only one in the country who is willing to get his knees in the breeze?

The jump is looking to be early April but to be confirmed.

Re: Langar Mass Skydive

sandra taylor — Sat, 16 Oct 2010 21:30:19 GMT

Good Luck guys, I will be rooting for you......... on the ground with my petition flag and petition for all those signatures.

Re: Langar Mass Skydive

Mark Hedberg — Sat, 16 Oct 2010 14:36:32 GMT

Good luck! I'm rooting for you all, but alas, i don't jump out of airplanes unless said plane is on fire. ;)

Re: Langar Mass Skydive

Caro Laithwaite VN — Fri, 15 Oct 2010 10:41:24 GMT

The charity is happy with us supporting them and have agreed that if each person raises more than double the course fee they can take the fee out of sponsership money once it is in.

Thanks Hannah but also try and talk others into jumping even if you don't want to

Re: Langar Mass Skydive

Hannah Wynne Richards — Fri, 15 Oct 2010 10:02:23 GMT

I'll sponsor you, as it's a good charity-and good luck with getting "veterinary nurse " to be a protected title

I won't join you, as I'm with Micheal in prefering not to jumpout of a perfectly good plane-to be absolutely honest, I prefer not to get more than 14: 3 off the ground (or 15:1 if I borrow a friend's horse )

Wynne

Re: Langar Mass Skydive

Arlo Guthrie — Fri, 15 Oct 2010 09:58:41 GMT

But regardless of my own situation, I do think epilepsy charities are important to support:

Epilepsy gets a fraction of the funding that AIDS gets, or breast cancer, which apparently affects the same number of people, I guess because it's just not a very fashionable condition.

Re: Langar Mass Skydive

Claire York RVN MBVNA — Fri, 15 Oct 2010 03:12:43 GMT

[quote user="Caro Laithwaite VN"]the campaign Nick and Sandra are running [/quote]

don't forget me

Re: Langar Mass Skydive

Caro Laithwaite VN — Thu, 14 Oct 2010 22:18:11 GMT

Slight change of plan we are going with one charity to make things simpler it will be the Arlo one for kiddies with epilepsy. Vicky and l discussed it and trying to split money between 2 and having some folks saying well l want money going to here not here etc would make things complicated. And as we want to set up a just giving page once we have permission from the charity it would be complicated with 2 of them, would need 2 pages. And also it is a known charity although Dippy one of the vetnurses worked with the one animal charity suggested one this way it is going to just as good a cause.

So l hope you will still be ok with it and as it is a known one with a good history support it just the same.

The nominated Charity is:
Muir Maxwell Trust

Re: Langar Mass Skydive

Caro Laithwaite VN — Thu, 14 Oct 2010 21:07:08 GMT

Will look into that need to get the ok's from charitys first thanks for the idea.

Re: Langar Mass Skydive

Michael Woodhouse — Thu, 14 Oct 2010 21:03:30 GMT

[quote user="Caro Laithwaite VN"]So based on that are you willing to take a chance and fall out of a perfectly good areoplane and say damm the fear? [/quote]

God no!

Are you setting up a justgiving page? I may pop a few quid in your pot. I'm not knocking the charity effort.

Re: Langar Mass Skydive

Caro Laithwaite VN — Thu, 14 Oct 2010 20:51:33 GMT

Mike I used the term "copyright" loosley as l am sure you are aware of the campaign Nick and Sandra are running you may be far away but not that far away. The tandem has 2 aims and l dont want this to become a thread about the campaign other than falling out of a perfectly good areoplane.

And you are not to far away unless it is a different country even then Regan was over from Spain the other day as are many from other countrys, not counting all the people l know who travel from all over the country to jump at Langar on a regular basis. From Scotland to Devon Langar is nice and central and the best DZ in the country.. ok l am biased it is my second home but hell what a home and great people

There is accomodation ok not great but it is a bed or B & B nearby for the more discerning. You can camp or caravan for free and there is lovely hot showers and a canteen.

So based on that are you willing to take a chance and fall out of a perfectly good areoplane and say damm the fear?

PS l live in Wigan and drive down for the day or several on a very regular basis.

Re: Langar Mass Skydive

Michael Woodhouse — Thu, 14 Oct 2010 20:22:20 GMT

Well good luck to those that are doing it. Too far away and you wouldn't catch me jumping out of a perfectly good aeroplane.

[quote user="Caro Laithwaite VN"]aise awareness in their campaign for copyrighting the VN name. [/quote]

Unless they invented the term [and I'm sure they didn't] they couldn't copyright it!

Re: Langar Mass Skydive

VickySVN — Thu, 14 Oct 2010 18:33:59 GMT

The more jumpers the merrier

Langar Mass Skydive

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The nominated Charity is:Muir Maxwell Trust

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The nominated Charity is:
Muir Maxwell Trust