My story

I've just had my hair cut by a 10yr old to raise funds for the Cystinosis Foundation Uk! I've started uploading photos for you to see ( apparently I can only have 10 on here) and if you're lucky I'm hoping to find time to edit a video clip for you. Bear with me folks!

 My 'stylist' for the day has Cystinosis and has to take a massive amount of medication. She was diagnosed at 10 months old and each month takes delivery of bottles of medicine, tablets,capsules, drops and eye drops weighing over 12kg in total.  She has to have eye drops every two hours during the day to disolve the crystals that are forming in her eyes and she has Cystagon every 6 hours around the clock. As well as this she takes oral medicines including sodium bicarbonates, potassium chloride and various other tablets. That's her in the picture and no, she didn't use the shears! I just thought that might make a few of you smile ;-)

Currently there is no cure and with around just 150 patients in the UK most of the fundraising done to help find one is done by family and friends of patients as the charity can't afford specialist marketing and it is therefore increasingly difficult to raise the amounts needed. Anything anyone can do to help would be so much appreciated.

 For more details visit http://www.cystinosis.org.uk

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now, this will of course guarantee you my everlasting love 'n' hugs. Sue xxxxxx

 Thank you SO much to everyone who has sponsored me, you've been very generous and I love you all.   My hair actually looks rather fab, she's done a great job. SOME photos will appear later.

Suze

xxxxx

 

My charity

Cystinosis Foundation UK

Cystinosis Foundation UK

Charity Registration No. 1074885

TO PROVIDE SUPPORT TO ANYONE DIAGNOSED WITH CYSTINOSIS, AS WELL AS THEIR FAMILIES AND FRIENDS. TO HIGHLIGHT THE DISORDER TO MEMBERS, THE MEDICAL PROFESSION AND THE WIDER COMMUNITY. TO ASSIST IN THE PROMOTION OF RESEARCH INTO THE TREATMENT OF CYSTINOSIS. TO WORK ALONGSIDE OTHER SIMILAR ORGANISATIONS IN UNDERSTANDING MORE ABOUT METABOLIC DISORDERS IN GENERAL

Donations 43

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Thankyou everyone! xxxxx Darcy tells me every day how lovely my hair looks!

Donation by Susan Smith on 29/02/12

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Looks like Darcy has done a good job! Hope you raise lots.

Donation by Jane Pegg on 06/02/12

£10.00

+ £2.50 Gift Aid

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Well done Sue. What a way to get a free hair cut. Glad to see you smashed your target. x

Donation by Paul Bird on 03/02/12

£10.00

+ £2.50 Gift Aid

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Darcy, very best wishes and good luck.. I think David wanted a short back and sides too.

Donation by Richard Simmonite on 31/01/12

£20.00

+ £5.00 Gift Aid

Donation by Jo Kristine Pike on 30/01/12

£5.00

+ £1.25 Gift Aid

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Very brave.. can't wait to see the new look on Tuesday!

Donation by Scott, Emma, Toby, Daniel, Alice Barnes on 27/01/12

£10.00

+ £2.50 Gift Aid

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Good luck Susan! Hope Darcy doesn't scalp you!

Donation by Ethne & Tom (Darcy's Nanna and Granda) on 25/01/12

£30.00

+ £7.50 Gift Aid

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well done and cant wait to see the pictures, from sue goulsbra and her family xoxox

Donation by sue goulsbras on 24/01/12

£20.00

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hi susan, keep up the good work.proud of you. love cuz steve and gang.x

Donation by steven hughes on 24/01/12

£10.00

+ £2.50 Gift Aid

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Simon & I are wishing you all the best! we are sure your new hair style will be fantastic! Waiting for Pictures!!xxx

Donation by Karolina Korf-Youlton on 24/01/12

£10.00

+ £2.50 Gift Aid

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Good Luck Darcy x

Donation by raymond boyland on 24/01/12

£10.00

+ £2.50 Gift Aid

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Well done on your efforts!

Donation by Maria Pekli on 24/01/12

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I'm sure you'll look gorgeous Sue!

Donation by Julie Bullous on 23/01/12

£10.00

+ £2.50 Gift Aid

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I hope this small donation helps you! From a cystinosis chick in Australia.

Donation by serena scott on 23/01/12

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Great cause ! Well done xx

Donation by Damien Froehlich on 23/01/12

£5.00

+ £1.25 Gift Aid

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Thank you for raising funds for Cystinosis, Good Luck xx

Donation by Kelly Chilvers on 23/01/12

£10.00

+ £2.50 Gift Aid

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Well done Sue. Great cause. You will be really scary after this.

Donation by GRAHAM MARGETTS on 22/01/12

£50.00

+ £12.50 Gift Aid

Donation by Anonymous on 20/01/12

£10.00

+ £2.50 Gift Aid

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Good Luck.

Donation by Anonymous. on 20/01/12

£10.00

+ £2.50 Gift Aid

Donation by John Wheelwright on 19/01/12

£20.00

+ £5.00 Gift Aid

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Well done. You ARE a nutter!!!!

Donation by Gillian Buckley on 19/01/12

£10.00

+ £2.50 Gift Aid

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Well done and Good luck. This is very sweet

Donation by shahrzad zargari on 17/01/12

£10.00

+ £2.50 Gift Aid

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Donation by Julie Fieldsend on 15/01/12

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Good luck xxx

Donation by Adam on 15/01/12

£20.00

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You never know... You might just be about to start a new trend in haircuts!

Donation by Adam on 14/01/12

£50.00

+ £12.50 Gift Aid

Donation summary

  • * Online donations£735.00
  • Offline donations£0.00
  • Text donations£0.00
  • Total raised£735.00
  • Gift Aid£151.25

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