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]
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........
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.
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.
you didn't post it so
linky
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
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]
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.....
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?
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?
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.
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.
£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.
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
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
Owelly - keep us posted... I'm happy to make a donation towards her walking frame.
Sorry, couldn't watch it. U2U sent though.
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!!
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.
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.....
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 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 
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!)
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
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
Its a good idea or we could have some kind of Top Gear challenge/race in them?
Or a relay John O Groats to Lands Endor summat.
Mind most of us on here are struggling to build just one car 
Further to the above I emailed my MP & got the following reply:-
"Many thanks for this link. I was not aware of this issue and will look into it.
Very best wishes and thanks again."
If we all emailed our MP's I think you would automatically raise the issue to at least an inspection by the House of Commons, probably by far the
most likely way to get decent funding.
To be honest the best thing would be for people on here to get together and design/build the equipment these kid's need.
Instead of people/companies ripping people off when having to buy and fund them.
There are some very clever people on here with a wide range of skills and equipment.i also read on another post about somebody setting up a business
building kitcars,forget it and start looking at what is required here.
Thanks
Greetings!!
I've spoken to Emlyns folks and they are adamant that they would like any donations to go to Rett Syndrome Research Trust. There is a page on
there where you can donate in Emlyns name
http://www.rsrt.org/news/Sponsor-A-Drug-2.html
I've already donated some cash to sponsor a drug as that seems to be the way forward for everyone with Retts, but if you want to send a donation
to me via paypal at owelly'at'fsmail'dot'net then I'll either add it together to sponsor another drug, or pass it on to the
Coates family, whatever you wish.
I'm really touched that so many folks have responded and so too are Emlyns folks!!
Many thanks, Owelly.
God bless, if anybody is interested in building a locost to auction off and raise money for the trust, I'd be happy to donate some spares towards the build...
Owelly
I know in your first post you stated you were after money but it seems there are a lot of people on here who would like to offer a few quid towards
maybe getting this £1200 walking frame..
Have you considered using Just giving ?
I would be happy to make a donation if you did.
Jason
I've had an excellent idea for a bit of fun and fundraising! Watch this space.....
But until I hatch my excellent(ish) plan, here's Emlyn and Co on the local news!!
http://www.itvlocal.com/tynetees/?player=TYN_HomePage_15&void=254099
Just a quick thread ressurection to update any interested parties!
OK, so the links from 5 years ago probably won't work but the message is still the same : but with a just giving link... ;-)
A lot has happened for Emlyn and her family since 2008. And a lot more has happened for the other Rett girls but here's a bit about Emlyn and
what she is willing to do to help where she can!! (Kori is Emlyns mum. Or mom as she's Canadian!)
https://www.justgiving.com/Kori-Dryhurst-Coates/
Still, this isn't a begging post but if you do have a couple of quid and a heart........ :-)
Thankyou. Owelly.
Owelly - Happy to help with a donation for mobility aids/support etc.
Donation sent
Ivan
[Edited on 1/5/13 by T66]
Cheers Ivan! You 've probably seen my Rett tweets!
Here's Emlyns mums blog:
http://lifeloveand.com/2013/05/01/team-whitby-home/
Some kind of lands end to john o'groats rally run thing would be great. People could join in and drop back out on stretches of the run that suit
them and their vehicles. If all entrants had to pay £50 and secure a minimum of £500 in sponsorship, and lets say just two hundred people did it, well
that'd... That would be, now then...err, hang on... 60... times, five, plus, errrr...Let me just... 14....Carry the 8 over, ah... Hang on, here
we go look, minus 12... Times three, equals
60?
SIXTY!
LETS DO IT.
I'd be up for that. I could drag a load of sponsorship up and a load of people in oddly shaped vehicles to participate.
I've just read this for the first time - i didn't watch the video as with a 2 year old and 6 month old I couldn't bring myself to. Do
you have a current page that donations can be made to?
Edit - found the link and donated.
[Edited on 1/5/13 by MikeR]
quote:
Originally posted by owelly
Cheers Ivan! You 've probably seen my Rett tweets!
Here's Emlyns mums blog:
http://lifeloveand.com/2013/05/01/team-whitby-home/
The original link no longer works as i was postd in 2008 and things have really moved on! I shall find a more up to date clip!
Many thanks to all those who are taking the time to read this and a bigger thanks to those who are wanting to donate.
https://www.justgiving.com/Kori-Dryhurst-Coates/
To be honest Ivan, unless the helicopter was painted in whichever Disney character she was currently into, I doubt she would be too interested! It's very kind of you to offer and I'll pass it onto the family.
No worries this end, totally get what your saying.
cheers
Just read the thread!
Donation sent
Thankyou.