My story

Thanks for taking the time to visit our JustGiving page.
We're three friends who have decided to do the Lyke Wake Walk in aid of The Cystinosis Foundation UK.
At 11 months old, the son of a very good friend of ours was diagnosed with Cystinosis, a rare and deadly disease which is destroying and killing the healthy cells in his body.
There are approx. 150 people in the UK and only 2,000 people in the world who suffer from this rare condition.
Cystinosis is a complex condition passed onto a child when both parents carry a recessive gene. Those with Cystinosis cannot process an amino acid called cystine used in every cell in the body. When the cells cannot rid themselves of the cystine, it forms crystals and from there a ripple effect is cast. The major effects of cystinosis include excessive thirst and urination, frequent vomiting and reflux, refusal to eat, failure to thrive, muscle weakness and bone disease, photophobia and kidney malfunction. The condition can strike any organ, the thyroid; pancreas, liver, spleen, and central nervous system are also attacked.
Without treatment, affected children develop end stage kidney failure at about nine years old, when dialysis or transplantation is a must and ultimately face death at a young age. The treatments available slow down the deterioration process, but life expectancy is greatly affected.
The medication to break down the crystals is Cystagon, it must be given orally every six hours, and it has an unpleasant taste and smell and regularly makes children ill. The medication causes nausea and cystinotic children are prone to gross reflux, so vomiting at every medicine session becomes the routine from the start. But as the vomiting brings up the medicine it has to be re-administered. In between the main medication sessions are additional sessions to replace the minerals lost due to the kidney dysfunction; these too cause vomiting and have to be re-administered. The majority of sufferers take approximately an additional 8 medicines. He may need to eye drops that are to be administered every hour whilst awake, they are unpleasant for young and old as they sting and they must be kept refrigerated.
Parents of cystinotic children talk of the never ending cycle of medicine and vomiting day and night, saying that there is barely time in between one session to prepare for the next. Children and parents become exhausted. In most cases a nasal gastric tube is fitted and sometimes a gastronomy button fitted (tube direct into stomach).
The medication is vital but no matter how much good it does it has terrible side effects. Bloods will be taken regularly which will reveal the dose required, when increasing the dose the initial cycle starts all over again with the constant vomiting and re-administration.
In the UK the Cystinosis Foundation UK, funds research projects looking at ways of improving the quality of life of cystinotics and supports work into stem cell research the key to a possible cure.
Our chosen challenge is The Lyke Wake Walk, recognised as a significant feat of physical endurance. The route is 41 miles long and ascends over 5,500 feet across the North Yorks Moors, at it widest part, from Osmotherly in the west to Ravenscar on the east coast.
We have chosen to do the crossing unsupported, meaning we have to carry all equipment and food required on the walk - most people undertaking the walk meet support teams at 5 or 6 check-points along the way in order to take on food, water and fresh clothes etc. - being unsupported increases the difficulty significantly since our packs will weigh between 14-20lbs. We intend starting the walk at 00:01 on Sunday 6th May and will walk the first four or five hours in complete darkness across extremely difficult terrain - see the route profile amongst our photographs!!.
Our challenge, however, pales into insignificance compared with that faced by sufferers of Cystinosis and their families every day. By raising money to support the Cystinosis Foundation we would hope that in some small way what we are doing might help to make a difference.
Any sponsorship would be greatly appreciated, thank you for reading our story.

My gallery 10

My updates 2

The three of us set out on our challenge at 00:00 hrs Saturday 19th May - 41 miles / 17 1/2 hours later we finally arrived at Ravenscar! The conditions on the day were probably about as hard as they could be. Heartfelt thanks to everyone for supporting us & Cystinosis Foundation

20/05/12 21:41

DUE TO AN INJURY TO ONE OF THE TEAM, WE HAVE HAD TO RESCHEDULE THE WALK TO SATURDAY 19th MAY. THANKYOU TO EVERYONE FOR THE SUPPORT WE HAVE RECEIVED - WE ARE HUMBLED BY EVERYONE'S GENEROSITY!!

06/05/12 17:44

My Teams

My company

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 129

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The Hairy Biker's are on the TV at the moment, I can hear their voices from downstairs.... which reminds me of something I need to do.

Donation by Richard Galloway on 03/04/12

£50.00

+ £12.50 Gift Aid

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Go on lads!! Well done all of you.... Best of luck with the walk. Ewan & Jen.

Donation by Ewan Cant on 01/04/12

£20.00

+ £5.00 Gift Aid

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Good luck!

Donation by Claire Askew on 29/03/12

£5.00

+ £1.25 Gift Aid

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we couldnt have supported such a fine bunch of fit fellows. good luck!!

Donation by colin howell on 29/03/12

£150.00

+ £37.50 Gift Aid

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Good Luck Guy's

Donation by Colin and Jenny on 29/03/12

£20.00

+ £5.00 Gift Aid

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Good luck lads!!

Donation by Alan Kearns on 28/03/12

£20.00

+ £5.00 Gift Aid

Donation by Lisa Handley (Civica UK) on 28/03/12

£200.00

Very well done!

Donation by Mike Gibson on 28/03/12

£10.00

+ £2.50 Gift Aid

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Go for it Hairy Hikers!

Donation by Anonymous on 27/03/12

£10.00

+ £2.50 Gift Aid

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Good luck

Donation by Jan Kitching on 27/03/12

£10.00

+ £2.50 Gift Aid

Donation by Natalie Murray on 27/03/12

£20.00

+ £5.00 Gift Aid

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Him with the tractor is a bit of a hunk.

Donation by Anonymous on 26/03/12

£10.00

+ £2.50 Gift Aid

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Good luck chaps.

Donation by Anonymous on 26/03/12

£20.00

+ £5.00 Gift Aid

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Go for it lads -A great cause ! Good Luck

Donation by Helen Neil Georgia and Tom xx on 26/03/12

£20.00

+ £5.00 Gift Aid

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good luck - hope the weather is 'bootiful' on the day! All the best from the Fletchers in Norwich

Donation by Rachel Fletcher on 26/03/12

£30.00

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Good Luck Hairy Hikers! Hope you achieve your fundraising target.

Donation by Tracy Lenehan on 26/03/12

£10.00

+ £2.50 Gift Aid

Donation by Anonymous on 24/03/12

£25.00

+ £6.25 Gift Aid

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Good luck guysx

Donation by Anonymous on 24/03/12

£10.00

+ £2.50 Gift Aid

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Crack on there lads. Just remember the wife & kids will be waiting for you at the end.

Donation by Ian on 24/03/12

£20.00

+ £5.00 Gift Aid

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Good Luck Fella's !! Great Cause !!

Donation by Colin Meek on 23/03/12

£10.00

+ £2.50 Gift Aid

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Such a good cause, good luck!

Donation by Louise Thompson on 23/03/12

Good luck and best wishes. Hope the weather is kind for you!

Donation by Stephen Snook on 23/03/12

£10.00

+ £2.50 Gift Aid

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Great cause! Good Luck Guys! :)

Donation by Annabel Choppen on 23/03/12

£20.00

+ £5.00 Gift Aid

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I think you should make Colin do it too! Best Wishes

Donation by Jill Swales on 22/03/12

£25.00

+ £6.25 Gift Aid

Donation by Jane Davies on 21/03/12

£10.00

+ £2.50 Gift Aid

Donation summary

  • * Online donations£2,491.00
  • Offline donations£25.00
  • Text donations£0.00
  • Total raised£2,516.00
  • Gift Aid£455.25

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