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Team Gracie's fundraising page

3 team members

Challenge complete

Fundraising for this challenge has ended so we're no longer accepting donations. Thanks to everyone who supported this challenge.

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

Team story

[lt]div[gt][span=text-align: left;]Firstly thank you for visiting our team page & supporting us.[/span][lt]/div[gt][lt]div[gt][span=text-align: left;][lt]br /[gt][/span][lt]/div[gt][lt]div[gt][span=text-align: left;]On Saturday May 25th [/span][lt]span[gt]myself Leon Moxam, Craig Fuller and Mark Risby will be taking part in the London[lt]/span[gt][lt]span[gt] [lt]/span[gt][lt]span[gt]to[lt]/span[gt][lt]span[gt] [lt]/span[gt]Brighton[lt]span[gt] Challenge, [lt]/span[gt][lt]span[gt]100Km ultra-marathon. We are doing this in support of the Ectodermal Dysplasia (ED) Society in Cheltenham.[lt]/span[gt][lt]span[gt] This is not a relay, all three of us will have to run 100km (60 Miles) in under 15 hours. [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt] [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt]Why? Last year my youngest daughter, Gracie Rose, was diagnosed with Incontinentia Pigmenti (IP), a vary rare genetic disorder. This is p[lt]/span[gt][lt]span[gt]rimarily  a skin condition but it also effects the eyes, hair, teeth, nails and the brain. [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt] [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt]The ED society is the UK support group for IP along with other ectodermal conditions and has been extremely supportive from the very start, and the crucial advice they gave us saved my daughters eye-sight. At just 3 months old, Gracie had to have eye surgery to prevent her going blind, this condition requires constant monitoring by Moorfields hospital, with possible operations until she is an adult and fully grown. [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt] [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt]Gracie also suffers from neurological problems which cause her to have developmental delay and weakness in the right side of her body. Gracie has a physiotherapist and occupational therapist to help her overcome these as she grows, and we are hopeful she will lead a normal life with hard work and determination. [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt] [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt]Since Gracie was diagnosed we have had to push for Gracie to be seen by many doctors because IP is so rare, with only around 1000 cases having been reported worldwide. [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt]Most medical professionals have never heard of, or ever come across Gracie's condition, making the care she receives very difficult. Her care is currently spread over a number of different hospitals, with the ED society helping us to get the best Doctors in all fields from Neurology to Dermatology around the UK. [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt] [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt]The ED society continues to support adults and children with all ectodermal disorders and makes a big difference to many families across the[lt]/span[gt][lt]span[gt] [lt]/span[gt]UK[lt]span[gt], as well as being an integral part of my daughter’s health plan for the foreseeable future.[lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt] [lt]/span[gt][lt]/div[gt][lt]div[gt][lt]span[gt]The team has decided to do something extra-ordinary to raise as much as possible for this amazing charity and raise awareness of Incontinentia Pigmenti.  [lt]/span[gt][lt]span class="ecxApple"[gt][lt]span[gt]Please could you support us as best as you can, it would be very much appreciated by myself, family and my two good friends, Craig and Mark. We are determined to complete this event and training has begun.[lt]/span[gt][lt]/span[gt][lt]/div[gt]

Share their story

Event

Personal Challenge Date

25 May 2013

Supporters

Jun 23, 2013

SFS Staff

Well done guys great efforts

£40.00 plus £10.00 Gift Aid

Jun 7, 2013

Andrew Hughes

Like my Dance moves I am always a little late. Great Job Boyo.

£20.00 plus £5.00 Gift Aid

Jun 7, 2013

Julian Pollock

Well done guys

£50.00

Jun 3, 2013

Tanya & Kevin

Well done guys

£100.00 plus £25.00 Gift Aid

May 28, 2013

Specialist Fleet Services Ltd

Well done on completing the run, a fantastic achievement.

£400.00

May 26, 2013

Carol Berry

Good luck Leon, love to you all. xxx Carol xx

£20.00 plus £5.00 Gift Aid

May 25, 2013

Helen, Paul, Scott and Harry

What an amazing achievement for a very worthy cause! Well done and put your feet up now:) xx

£20.00 plus £5.00 Gift Aid

May 25, 2013

Rada, Ped, Ana n Ivie

Best of luck!!

£10.00 plus £2.50 Gift Aid

May 25, 2013

Scott & Claire

Wow what a challenge! Keep them motivated Riz and best of luck to you all x

£10.00 plus £2.50 Gift Aid

May 25, 2013

Sophie Bullman

Good luck guys x

£10.00 plus £2.50 Gift Aid

Leon Moxam

Leon Moxam

mark risby

mark risby

Craig Fuller

Craig Fuller