owelly
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| posted on 31/10/08 at 12:07 PM |
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Owelly needs you!! Just 5 minutes of your time.
Here's the deal. Since I've been frequenting Locostbuilders, I've been as helpful as I can. I've made stuff for folks, sent
stuff for folks, taken stuff off my own car and driven across the country for folks who I only know through Locostbuilders. I've never asked for
any money as it's time I'm short of! If I have spare time, you're welcome to it!
Now I need your time. Just 5 minutes of it to watch a few clips put together to show the effects of Rett Syndrome.
About the same time as my son was born, our good friends had a daughter, Emlyn. My son TJ, and Emlyn are best mates but as TJ was just learning to
walk and talk, Emlyn didn't. Folks put it down to her been a late develper. As my son was running around and causing a nuisance, Emlyn sat on
the floor squeaking. Something was wrong.
After a lot of research and medical probing, she was diagnosed as having Rett Syndrome.
The clips explain it better than I ever could.
As I look at my sons developement through the hundreds of photos that we've taken, I'm struggling to see how Emlyns parents can face the
future. Emlyns developement is regressing at an alarming rate and there is every chance that she could wake up one day, and have forgotten how to
swallow, how to use her hands, how to open her eyes.
It really is heart breaking.
I'm still not asking for money!! Emlyns not your problem and she's only my problem as I've made her my problem. She does need money
and lots of it as the NHS are unable to fund most of the gear she needs but, as I've said, this isn't a begging post!!
Her smile has got under my skin and I need to help her. All I want you folks to do is watch the clips. It will make me feel better if as many people
know about this as posible.
To those of you who have kids, can you imagine been told that your healthy child has a problem which will effect all of your lives and that nothing
will be the same again? I can't imagine it.
Anyhoo, here's the clip.
Face to Face with Rett Syndrome.
The clips are an insight to what Emlyns parents have to look forward to!
Thanks for taking the time to read this and thanks even more if you have looked at the linky.
[Edited on 31/10/08 by owelly]
http://www.ppcmag.co.uk
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MikeCapon
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| posted on 31/10/08 at 12:17 PM |
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As father to 21 month old twin girls that's the toughest 5 minutes I've spent for a long time.
Why no public funding when all over the world money is wasted on things that just don't matter........
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mistergrumpy
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| posted on 31/10/08 at 12:17 PM |
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Humbling to think that people are spending £300 here on a set of brakes or £600 on some shonky fibreglass bodywork or even £10 - £15k on a
"hobby" car.
I bet that if we all had a rake through the garage and sold a bit of that unwanted stuff then the money could be well placed.
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DarrenW
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| posted on 31/10/08 at 12:20 PM |
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Vids dont play too well in my computer for some reason but i tried to watch it.
I cant begin to imagine what it must be like for the parents and close friends. Its a sobering thought.
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Mr Whippy
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| posted on 31/10/08 at 12:20 PM |
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you didn't post it so
linky
Fame is when your old car is plastered all over the internet
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coozer
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| posted on 31/10/08 at 12:24 PM |
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My mother died horribly from motor neuron disease. It was a slow deliberating thing that was not nice to watch over the years.
The moral here is that there is a drug that can stop MND but as there are so few sufferers there is no funding for testing.
I sympathise with your feelings Owelly.
Steve
1972 V8 Jago
1980 Z750
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mistergrumpy
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| posted on 31/10/08 at 12:26 PM |
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Out of interest could people not donate directly to Emlyn for things like clothing, transport costs or whatever. I guess it all adds up.
I know that whenever I've raised money in the past we've always gone for the personal touch.
[Edited on 31/10/08 by mistergrumpy]
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BenB
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| posted on 31/10/08 at 12:35 PM |
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Very sad 
Personally it makes me wonder even more why we spend (as a country)
33 billion pounds
on the military each year.......
.... usually to inforce America's foreign policy....
Rett's is linked to a genetic mutation. Gene therapy is possible nowadays. The answer is out there and it wouldn't cost anything near 33
billion.....
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r1_pete
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| posted on 31/10/08 at 12:42 PM |
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It would be great if a reversal treatment was developed.
But in the meantime, with the fabricating skills on here, couldn't we make some of the kit that is needed?
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nick205
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| posted on 31/10/08 at 01:45 PM |
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Difficult viewing and the 2nd time recently I've been made to count my blessings.
With 3yr old and 6 month old twins my wife and I sometimes feel we're running to stand still. It only takes a moment to re-perspective things
though as all 3 of them are fit and healthy.
AS R1-Pete says - maybe we can collectively contribute to produce some useful kit?
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maartenromijn
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| posted on 31/10/08 at 02:13 PM |
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It's a sad story. As above I makes me realise how lucky one can be having 2 healthy children.
I will share this video with family and friends.
In my opinion it's a great initiative to design and create adaptive equipment. This initiative matches the interests and skills op the people on
this forum. Unfortunately I am on the other side of the puddle.
BLOG: http://thunderroad-super7.blogspot.com/
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owelly
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| posted on 31/10/08 at 02:40 PM |
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So far 234 folks have at least looked in on this thread. And I've had an excellent response. To be honest, it's probably for my own
benefit that I'm sharing this as I feel totally helpless to do anything to help Emlyn and her folks, Darren and Kori.
At the moment, Emlyn doesn't need much equipment as she's only three. She can be manually lifted around.
As for donations for Emlyn;
Her parents have never asked for help and they never intended to but the local press has picked up on her case in an attempt to raise awareness and
hopefully cajole the local health authority into helping more. As an example, it was recently suggested that Emlyn would benefit from a walking frame.
I was thinking of buying it for her and was astounded that it was £1200!!! As it happens, there is a local charity that has offered to help.
I sold our 'spare' car and have been putting cash to it for the next time they have an unexpected outlay of cash!!
Once again, thanks for the support and words of encouragement. I'll pass your comments on to Darren and Kori.
http://www.ppcmag.co.uk
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DarrenW
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| posted on 31/10/08 at 02:52 PM |
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£1200 for a walking frame
Why is it that as soon as something is developed to aid a disability (sorry to use that word if its not appropriate) or that will be bought by local
authorities in the main that a ridiculous price tag is attached. i know there is more to product pricing (low volume, specialist design etc) but
surely there is no reason for some things to be so costly.
If it was me i dont think id be terribly happy about being put into the public eye, but i hope they are treat with the respect and sensitivity they
deserve and are helped out. They are lucky to have true freinds like you. You are a special person.
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bbwales
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| posted on 31/10/08 at 03:02 PM |
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Hi,
The prices for specialist equipment in this country is ridiculous, I am a keen Rotarian and through Rotary a charity called "The Jaipur
Limb" was set up and small factories were started to make artificial limbs for people who lost their legs, these are made from drain pipe and
other bits and pieces to a total cost of £40 if I remember correctly, here a basic limb costs over a grand, something wrong here.
There are now a number of factories set up all over the world.
Regards
Bob
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24vseven
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| posted on 31/10/08 at 04:47 PM |
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have just watched the vid through very thought provoking and moving and my heart goes out to any parent having to watch there child suffer this and to
the child
as was mentioned briefly earlier can we not do somthing to help as a community
ie we all must have somthing kicking around in the garage a spare gauge mirror or somthing can we not "donate" these for an auction to
rasie a few funds
as was mentioned before 250 thread views if everyone just gave somthing worth a cpl of quid thats £500 rasied
am sure that would help
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scootz
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| posted on 31/10/08 at 05:13 PM |
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Owelly - keep us posted... I'm happy to make a donation towards her walking frame.
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Confused but excited.
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| posted on 31/10/08 at 05:37 PM |
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Sorry, couldn't watch it. U2U sent though.
Tell them about the bent treacle edges!
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johnston
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| posted on 31/10/08 at 06:26 PM |
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couldnt watch all of that with an 8 month and another one on the way, I dont know if i could cope. I dont know how anyone else does
As lot of other people have said WTF is the government doing spending money on things people don't agree with and re-enforcing american policy
when things like this need adressing!!
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russbost
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| posted on 31/10/08 at 06:59 PM |
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My kids are reaching the age where I just thank our lucky stars that they've got thro' the years we associate with childhood traumas,
I've just sent my eldest off to uni, something these kids are never going to have to look forward to.
The videos tough to watch & I think it might have been better had they put the stuff about no funding etc in earlier as I'm sure a lot of
people can't bear to watch to the end.
Owelly, I assume there would be no objection to putting a link from my website to the videos & the other Retts site that a links been put on
for?
many users of this forum have their own website - if we all put on links to these sites indicating the lack of government funding then this would at
least help to spread the word. If we all email the links to our regular friends etc on our address books this should reach all around the world in a
short time.
I no longer run Furore Products or Furore Cars Ltd, but would still highly recommend them for Acewell dashes, projector headlights, dominator
headlights, indicators, mirrors etc, best prices in the UK! Take a look at http://www.furoreproducts.co.uk/ or find more parts on Ebay, user names
furoreltd & furoreproducts, discounts available for LCB users.
Don't forget Stainless Steel Braided brake hoses, made to your exact requirements in any of around 16 colours.
http://shop.ebay.co.uk/furoreproducts/m.html?_dmd=1&_ipg=50&_sop=12&_rdc=1
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NOTE:This user is registered as a LocostBuilders trader and may offer commercial services to other users
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dinosaurjuice
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| posted on 31/10/08 at 07:15 PM |
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quote:
Originally posted by BenB
Very sad
Personally it makes me wonder even more why we spend (as a country)
33 billion pounds
on the military each year.......
.... usually to inforce America's foreign policy....
Rett's is linked to a genetic mutation. Gene therapy is possible nowadays. The answer is out there and it wouldn't cost anything near 33
billion.....
wouldnt it be nice if the hospitals had the money they needed, and the army had to hold jumble sales to buy guns.
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russbost
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| posted on 31/10/08 at 07:27 PM |
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Further to my comments above, I've just done an email which I've sent out.
I've put the following in the subject line as the bulk of what I usually send is jokes & stuff (which suddenly seems very frivolous):-
Rett Syndrome - Sorry, this isn't funny, or nice, but please read
The text of the email is below, copy/paste it into your own emails, modify it as you wish, but please take the trouble to do something other than just
make the right noises here!
Ok, it's unusual for me to do anything which is remotely serious or helpful to anyone, but this was brought to my attention recently & I
feel it deserves a wider publicity.
There is no public funding for this, it's linked to autism but is far more damaging in the long term, but there is a potential cure which they
are never going to achieve without a lot more money put behind it - I'm not asking you to put your hand in your pocket, tho' if you feel
inclined you can do so thro' the second link, but if you all forward this to the bulk of your address book perhaps it may get the world
attention it deserves & perhaps then they may get the funding needed.
http://www.rsrt.org/donors/face-to-face-with-Rett-Syndrome.html
http://www.rettsyndrome.org.uk/donations.htm
Just forward it on, that's all I'm asking, & do your best to make sure your friends do to
I no longer run Furore Products or Furore Cars Ltd, but would still highly recommend them for Acewell dashes, projector headlights, dominator
headlights, indicators, mirrors etc, best prices in the UK! Take a look at http://www.furoreproducts.co.uk/ or find more parts on Ebay, user names
furoreltd & furoreproducts, discounts available for LCB users.
Don't forget Stainless Steel Braided brake hoses, made to your exact requirements in any of around 16 colours.
http://shop.ebay.co.uk/furoreproducts/m.html?_dmd=1&_ipg=50&_sop=12&_rdc=1
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NOTE:This user is registered as a LocostBuilders trader and may offer commercial services to other users
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mistergrumpy
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| posted on 31/10/08 at 07:45 PM |
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I watched the video the whole way through and yes it is sad but it brought a smile to my face as throughout, the little girl Emlyn always seemed to
have a smile on her face.
Now that's true smiling in the face of diversity 
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owelly
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| posted on 31/10/08 at 08:19 PM |
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Many thanks again folks.
But just to clarify, the girl in the vid isn't Emlyn. Emlyn is only three and as yet, her physical appearance gives no clue as to what she and
her family are facing.
As I've said from the start of this thread, I'm not begging for cash.
If anyone feels like they want to donate, please U2U me and I'll find the best way to get any funds to Emlyn.
Thanks again and please keep spreading the word if you have a spare moment.
Cheers. Owelly (and Emlyn!)
http://www.ppcmag.co.uk
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Howlor
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| posted on 1/11/08 at 09:46 AM |
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I'll have a good rummage around the garage and get bits on ebay.
Why don't we all try to organise an event, something a bit different, world record attempt or something. I don't mind giving up my time
and I am sure we can all get sponsorship from our companies etc etc.
Any body got any interesting thoughts of what we could do?
Steve
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Howlor
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| posted on 1/11/08 at 09:51 AM |
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Here's a thought - How about we get in to say 3 groups, South, North and them lads north of the wall! I am sure we could all find enough bits to
build say 3 cars. Even if we approached 3 of the manufacturers for the basics. I am sure we could get plenty of press coverage for something like
that.
Only a suggestion what do you guys think? The cars could then be auctioned etc.
Steve
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