Thank you for visiting my fundraising page.  This is my husband, Roger and our daughter, Evie, who has Rett Syndrome.  Evie is nearly 6.  She can't walk, talk or use her hands, but she understands lots and is an absolute joy. 

Rett Syndrome is a complex disorder, but there are some exciting research developments and we hope that in the not too distant future, there will be genetic treatments available.  In the meantime, a lot of work is going on to understand ways to maximise these children's potential and to treat the symptoms of their disorder.

Roger is going to run the London Marathon in April 2008 to raise money for the Rett Syndrome Association, UK and we need your help.

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor us: RETT syndrome Association UK will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

So please dig deep and sponsor Roger.

Many thanks for your support.

UPDATE - JANUARY 2008

Great News! We have already just about met our original target of £4000,thanks to our dear friend Tarina, who met some lovely people from Toyota in the States (Michael and Marshall) and inspired them to donate $US 4000.  I have therefore increased our target to £5000.  I'm sure we can reach that, or even smash it!

Roger's training is going well, although he finds it difficult in this weather to get outside for a run.  The countryside round here is awash and we don't want an injury at this stage, so he is getting to the gym most days.

Evie is now 6.  We had a fabulous party in a local  village hall.  Entertainment was provided by Clown Bluey and Evie's Godfather, Norman dressed up as Santa, which was a sight to behold!  She has been in relatively good health this winter.

Thank you to everyone who has donated so generously, but we need to keep going, so please tell all your family and friends about our cause. 

Regards, Helen, Roger, Evie and Harry x

UPDATE - MARCH 2008

We have just reached our second target of £5000, so we are throwing caution to the wind and raising the target to £7000.  This may be a bit ambitious, but we want to do our best for RSAUK, who rely solely on donations and grants for income.  The RSAUK provides a vital service to families and professionals and also channels funds in important research.

To give you some indication of the costs involved for RSAUK, see below:

£100 allows RSAUK to produce and distribute support and information packs for 10 families who have just found out their child has Rett Syndrome;

£500 funds the Support Service for one week.

£1000 funds the production of one issue of the magazine Rett News, which gives families the opportunity to share experiences, fundraising ideas and advice.

£5000 runs a multidisciplinary clinic for children and adults with RS, giving families and professionals access to Doctors and Therapists with expertise in this condition.

Next month, Evie will be taking advantage of these Rett Clinics at Great Ormond St Hospital, as we are currently seeking expert advice on scoliosis, reflux and communication aids.

Many thanks to everyone who has donated to our cause, with particular thanks to Roger's colleagues and the residents of our village.

If you're interested, take a look at these online reports:
www.vision-news.tv (look for a video report called 'Roger runs for Evie')
www.salisburyjournal.co.uk (look for an article called 'Running for Rett Syndrome and Evie').

regards, Helen, Roger, Evie and Harry xxxx

UPDATE - 13 MARCH 2008

Exactly one month to go!!!!!!!!

UPDATE - 14 APRIL 2008

Well, yesterday was the big day.  We were up at 5am for a cooked breakfast before Roger left at 6am to catch the train to London.  He just made the starting line for his 9.45am start with 4 minutes to spare!   This put him at the back of the crowd, but he reckons that being forced to run more slowly in the first half meant he was able to power past all the less fit people who were dropping like flies in the second half!  Either that or it was the bacon sarnies, 2 bananas and energy drink he had just before the race that gave him that extra zing!  His official time is 3 hrs, 28mins and 40 seconds.  Roger is fine form today, although he's finding it a bit difficult going up and down stairs, but our house is all on one level, so that's not too much of a problem.

IMPORTANT THANK YOUS

Thank you to Norman and Jill for finding him, feeding him and bringing him home afterwards.  Thank you to Jeanette for hosting a Marathon-inspired garden party in Melbourne, Australia on the day.  Wish we could have been there.  Thank you to everyone in Winterbourne Stoke for your wonderful support, especially Ian, Ann, Vicky & Billy for the coffee morning and Dave at the Bell Inn for all your support.  Thanks to Sue & John at Heale Garden cafe for your fundraising efforts.  Thanks to everyone who has phoned or sent best wishes before and after the race and to those who texted Rog on the day itself - it meant a lot to him.  And lastly thank you to EVERYONE who has contributed to our cause, with mega thanks to our old friend Tarina, who is responsible for a large chunk of our incredible total.

It is not too late to contribute though.  Our website remains live until 13th June 2008, so hopefully we will reach our £7000 target by then!

regards, Helen, Roger, Evie and Harry