Simon and Graham are embarking in a 3 day 2 night Expedition to Scotlands Cairngorm National Park mountain range, will consist of 57km hike. Simon says "We will be climbing the UK second highest mountain Ben Macdui unlike Ben Nevis Ben Macdui is situated in the centre of a vast wilderness This route is a remote hike that leads up to an exposed arctic like plateau which experiences savage weather conditions we hope to climb a further 4 mountain peaks Cairn Lochan, Stob Corie an t- Sneachda, Cairn Gorm, and The Saddle. They are planning to cover an average of 18km per day and we will be ascending altitude of 1309m at the highest point. This is one of the most remote parts of the UK we will be sleeping on the mountain range for 2 nights and have to be self sufficient for the entirety of our expedition carrying all our own equipment."
Dylan was first diagnosed with the disease Ullrich Congenital Muscular Dystrophy when he was 3 years old.
To make matters worse he was also diagnosed with scoliosis of the spine. Curvature of 40o Nov 2005, 63o Feb 2007,&76o Aug 2007.
To contain this Dylan was fitted with a plaster cast in Oct. 2007. Below are a couple, of the many he has had fitted over the years!
November 2010, Dylan had the growth rods fitted at Great Ormond Street Hospital. This is the first of many operations Dylan has to endure. It’s not easy at his age!
The growth rods in Dylan’s back have helped immensely but the downside to this is he has to have them adjusted every six months until he is old enough to have them fused. He also still needs to wear a cast on his torso.
Dylan has difficulty walking as his condition causes contractures in his tendons, which in turn means he can only walk on the balls of his feet. This means Dylan is in pain when he walks. To try and help stretch his Achilles tendons he now has to have plaster casts on both legs from the knee down for at least 8 weeks (serial casting), another challenge for Dylan!
Life is difficult for Dylan and his family but they all remain positive, especially Dylan, he never gives up! He sometime gets ‘down’ but even then he is still determined to carry on.
His efforts have been rewarded recently withwinning The Sentinel ‘Child of Courage Award’ and was fortunate enough to be selected by Great Ormond Street Hospital, to go to the F1 practice day at Silverstone, here he met Lewis Hamilton and Jenson Button, who signed Dylan’s “wheels”.
Dylan is a brave and inspirational boy who has suffered all his life and things will only get more and more challenging for him.
PLEASE help us to try and improve his life by supporting the extension project Dylan so desperately needs.
We are looking for any help available, no matter how small.
We understand in the financial climate of today giving any donation is difficult but any contribution would be greatly appreciated, whether it be financial, voluntary working time, knowledge, expertise, materials or tools.
All of which we need to complete Dylan’s extension.
Local Openreach Engineers and Managers come together as a Community
Just a quick note to advise the Openreach Staffordshire & Shropshire Community Calendar is now on sale!! It has been a fantastic effort by all involved including the models, photographer, and those who rallied round on the day of the shoot making tea and bacon butties for all. Designed by Westhill,of London, and printed by Xerox.
The final result is great quality and epitomises what Openreach Communities is all about!!
Sincere thanks to all involved. If you want a copy they will be on sale at £5 each and 100% goes to Dylans Trust a fantastic and worthy cause. If you would like some copies to sell on behalf of the charity or buy one please let me know.
The Dylans Trust has been set up for our Wonderful Son, Dylan
Dylan was diagnosed with a Congenital Muscular Dystrophy, in October 2005. The CMD that Dylan has is Ullrich Congenital Muscular Dystrophy. This isa disabling, progressive and life limiting disease for which there is no known cure, yet.
With the help of this website and through fundraising efforts, we aim to increase awareness of Dylans condition, and raise money in an effort to provide him with the best quality of life that he can have. We are in the process of trying to raise £32,000, (+ Through floor Wheelchair lift) so that we can extend our house to incorporate a bedroom and "wetroom" for Dylan. There is a lot of essential specialist equipment that for both in and out of the home, that will help Dylan. Our intention then is to continue raising both funds and awareness that will benefit the research into his condition.
We are arranging a few fundraising events, in the near future, but we still have a way to go. So, if you would like to take part in any of our fundraising events, organise your own event, sponsor an event, or simply donate to Dylans cause, we would greatly appreciate your help and support
Thank you so much for taking the time to visit our site, we hope you return soon. Dylan, Shel and Warren
As you may know, we have finally managed to get planning permission for Dylans Extension. So we now how the very challenging task of raising some £32,000.
We have managed to find a website that you can use as a search engine same as "google". But each time you use it to search DylansTrust will receive 0.33p , yeh a third of a pence. I know it's small but it all counts.
Also if you register and then use the link to buy things online from places like Amazon, Comet etc then some of the price will be given to DylansTrust. I think between 5-15%. so if you can it would be really appreciated. It's the link below :