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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.