Nicholas White is fundraising for RETT syndrome Association UK

Nick's page

British 10K London Run 2009

on 12/07/2009

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Raising money for

RETT syndrome Association UK

Charity Registration No. 327309

Rett syndrome is a rare neurological disorder affecting mainly females and very few males. People with Rett syndrome have profound and multiple physical and learning disabilities and are totally reliant on others for support throughout their lives.

Imagine a healthy baby girl start to become a little person; smiling at 6 weeks, picking things up when she’s 7 months old and at 10 months, she’s crawling her way into everything. Imagine her 1st birthday; she sits up without help and smiles at the camera - even saying her own version of “cheese.”

Now imagine that same baby at age 2. She can no longer sit unaided, stops using her hands to do things and starts wringing them all the time. She starts having seizures and by the time she’s 3, she is grinding her teeth and stops talking. At 6, her spine starts to curve, limiting how well she can move. She screams and laughs during the night for no reason and doesn’t respond to or interact with others. By her 8th birthday, she can’t move on her own, can’t talk and pulls away from social contact with others. This is the reality for parents with children who have Rett syndrome. RSAUK is a national charity seeking to make a difference for people living with Rett syndrome by:

Funding research
Supporting families through telephone support, clinics and our network of support advisers
Providing latest information and best practice
Promoting awareness

Page owner

Nicholas White

RSS

Raised: 228%

Target: £4,000.00
Raised so far: £9,125.00

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My story

Thanks for taking the time to visit my JustGiving page and donating money to the Rett Syndrome Association UK.

I have a daughter Olivia (aged 7) with Rett Syndrome.

Rett Syndrome is a severe neurological disorder caused by a random genetic mutation. It affects mainly girls. Rett girls appear normal at birth and follow a normal developmental path until about 6-12 months of age when they start to lose skills they have previously developed and regression sets in.

Whilst there is variability in the severity of the disorder, most people with Rett syndrome have profound physical and learning disabilities and are highly dependent on others for all their needs throughout life. The strain placed on family life through have to look after a Rett girl can be enormous.

In Olivia's case the severity is classic. She cannot talk or walk and has close to no voluntary control of her limbs. She has various medical problems which create ongoing health issues. She needs constant 1-on-1 care.

Whilst Olivia's life is tough and often times she is sad or upset or in pain she also shows great happiness. The picture above from a couple of years ago shows her in one of those happier moments.

Your donation will help the Rett Syndrome Association provide support to people affected by Rett Syndrome and contribute to funding for research with the aim ultimately of finding a cure.

	Better late than never ... I hope you and yours are doing well. Donation by omar abbosh 12/09/09	£150.00 + £42.31 Gift Aid
	Congrats on the race and best wishes for Olivia and family Donation by sunni chauhan 20/08/09	£100.00 + £28.21 Gift Aid
	Congratulations on the race. Kind Regards Marina, Paul, Oscar and Alfie Donation by Marina Russell 03/08/09	£75.00 + £21.15 Gift Aid
	for mini marathon Donation by alice Lucas 01/08/09	£50.00 + £14.10 Gift Aid
	Nick - sorry for late reaction and thanks for the proposal to donate for this cause Donation by dman 24/07/09	£200.00
	A Very Deserving Cause Donation by Hugh Scott-Barrett 21/07/09	£250.00 + £70.51 Gift Aid
	Well done Nick!! Donation by Robert Falls 21/07/09	£200.00 + £56.41 Gift Aid
	Great work Nick - hope it went well. Donation by Joe Lister 16/07/09	£50.00 + £14.10 Gift Aid
	Congratulations, Nick, on such a tremendous effort. Marko, Sarita, Ana, Leo and Tanya Donation by Sarita Kraljevic 13/07/09	£50.00 + £14.10 Gift Aid
	Best of luck Nick! Donation by Nick Leslau 09/07/09	£1,000.00 + £282.05 Gift Aid
	Good luck Nick - expect to see you setting the pace! Donation by Edward Knight 08/07/09	£100.00 + £28.21 Gift Aid
	ciao a tutti Donation by stefano pistolini 08/07/09	£100.00
	Good luck for the run! Donation by Diane and Gilles Bonnier 06/07/09	£150.00 + £42.31 Gift Aid
	Donation by Ulf + Barbara Pleschiutschnig 06/07/09	£150.00 + £42.31 Gift Aid
	Best wishes! Donation by Philipp Westermann 02/07/09	£200.00 + £56.41 Gift Aid
	Good luck Nick... Donation by Jason Blank 01/07/09	£200.00
	Best of luck. Great cause. Donation by Piers Harris 01/07/09	£100.00 + £28.21 Gift Aid
	Great job Nick. Enjoy the run. Jason Donation by Jason Purcell 30/06/09	£200.00 + £56.41 Gift Aid
	Best wishes and good luck! Donation by xavier pullen 30/06/09	£200.00 + £56.41 Gift Aid
	Enjoy the run Donation by Mark Brooker 30/06/09	£100.00 + £28.21 Gift Aid
	all the best nick Donation by david anderson 29/06/09	£200.00
	good luck with training Donation by Donovan Campbell 29/06/09	£50.00 + £14.10 Gift Aid
	Good luck on the day for such a worthwhile cause. Donation by Paul Baker 29/06/09	£250.00
	Good luck with the run, expect I'll see you training on Hampstead Heath... Donation by Thomas Hill 29/06/09	£100.00 + £28.21 Gift Aid
	All the best and good luck! Donation by Tiziana Galassini 29/06/09	£100.00 + £28.21 Gift Aid
	Nick, good luck - I know from my oldest son's current fundraising that every penny of support helps and is greatly appreciated...! Donation by Elisabeth Stheeman 29/06/09	£100.00 + £28.21 Gift Aid
	All the Best! Oliver Donation by Oliver Puhl 29/06/09	£100.00
	best of luck! Donation by David Lockyer 29/06/09	£100.00 + £28.21 Gift Aid
	With all our support, best wishes and love! Have a great run! Donation by Family Haataja 29/06/09	£200.00 + £56.41 Gift Aid
	Good Luck! Donation by Fatima Gonzalez-Haba 29/06/09

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* Total raised online:	£6,625.00
Offline donations:	£2,500.00
Gift Aid plus supplement:	£1,445.51

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