My story

 

Cystinosis is a rare disease - it causes problems with an amino acid that can crystallise in the cells and cause organs to shut down. It is not a case of if but when a child will need a new kidney to survive.  Most don't lead normal lives, and the ones they have are marked by sickness and pain.


A True Account

When our second son started losing weight and drinking lots of water I knew that there was something wrong. He was four months old when he started to show these symptoms. It was because of my continued persistence at the health clinic, over the course of the next four months that eventually they agreed to test his urine. That too was to reassure me that there was nothing wrong! At that point we ended up at the Children’s Hospital where we were told that he had kidney problems.  It was about ten days later when they told us that the kidney problems were due to a rare condition called Cystinosis.

The words ‘no cure’ stayed with us for a long time. ‘Cystinosis’ and ‘metabolic disease’ were foreign words to us back then.

We quickly learnt how to give medication and which order to give it so that our son would be less sick. He was given medication to replace the salts he was losing through his damaged kidneys at least four times a day. He was also given a drug called Cystagon every six hours to slow the build up of cystine crystals in the organs. It’s difficult trying to give your child a medicine which makes him violently sick and at times causes him to bruise easily. This drug needs to be given as close to the six hours as possible - that means overnight too. My child has a disturbed sleep and I end up functioning with half a brain. We are constantly tired and lack of sleep does not help!

At a year old he was tiny and he needed to gain weight. A naso-gastric tube was inserted and he was fed via this tube for a year or so. Then doctors cut a hole in his stomach and inserted a feeding tube.  He can now be drip fed through a gastric button overnight to help him gain weight. This feeding method will stay with him until he starts to eat to maintain his weight.

Our son has adapted well to life; despite being poked and prodded so much for blood tests and various other tests he just seems to get on with it.  He is a  little boy who wants to be as normal as possible and sometimes complains that he wants to be like other children.   He is at that age now when he asks ‘why have I got cystinosis?’, ‘why am I always hurting’, and ‘I want to be normal’. We have always told him the truth about his condition ‘yes you do have cystinosis and you have to take lots of medication’. We tell him that he is special and loved. He has been through so much - to me he is the bravest person I've ever met.

 

We have now got together 10 people running for Cystinosis Foundation and hope you will support us in our dedication to help this charity.

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.

My gallery 1

My updates 2

We have now had the last of the donations that I'm aware of so many many thanks to everyone for all your support and genorousity. Hope next year's just as successful!

24/05/12 22:21

Just completed the 10k Derby Run in a time of 1:16:53. All my other buddies also finished so well done and thank you to everyone.

01/04/12 13:04

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 16

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Ranjit, Well done for a great run and raising so much donations.

Donation by J S Saund on 24/05/12

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Hi, it was a pleasure to run with/for you, I hope the money is of great use!

Donation by Michael Barraclough on 17/05/12

£150.00

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Well done! Great cause. Look forward to the next one.

Donation by Narinder Manku on 03/05/12

£241.05

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Look forward to the next 10K. For a mega cause we have all done well

Donation by Jatinder Mudan on 21/04/12

£160.00

+ £40.00 Gift Aid

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Well done you old man and all your friends - Tanveer, Stan @ TLI, RHC Boys & Sat.

Donation by Satnam and Manjit on 17/04/12

£360.00

+ £90.00 Gift Aid

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Well done!

Donation by Joginder Bhooee on 05/04/12

£50.00

+ £12.50 Gift Aid

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Good luck with the run

Donation by Gurprit Khanba on 31/03/12

£30.00

+ £7.50 Gift Aid

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Ranjit - what a great cause! Have fun! I will be think of you and the good deed. Your brother :-)

Donation by Arbinder Soor on 29/03/12

£25.00

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Good luck Mamma! x

Donation by Gups Khanba on 29/03/12

£20.00

+ £5.00 Gift Aid

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Good luck!

Donation by Satnam MacLean on 22/03/12

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Good luck, will be thinking of you, have a fun run!

Donation by Sukhy on 21/03/12

£30.00

+ £7.50 Gift Aid

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Lots of luck uncle!

Donation by Jat on 25/02/12

£10.00

+ £2.50 Gift Aid

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Raise some money for all the people who suffer from this terrible condition and to give suffers and familes hope for the future! Good Luck Ranj..

Donation by Mote on 19/02/12

£50.00

+ £12.50 Gift Aid

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Good luck and hope u raise loads

Donation by Anonymous on 13/02/12

£20.00

+ £5.00 Gift Aid

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Run Sherwood Forester Run !

Donation by Kalwinder Singh Dhindsa on 13/02/12

£10.00

+ £2.50 Gift Aid

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Good luck with the run! :-)

Donation by S Khanba on 13/02/12

£10.00

+ £2.50 Gift Aid

Donation summary

  • * Online donations£1,356.05
  • Offline donations£0.00
  • Text donations£0.00
  • Total raised£1,356.05
  • Gift Aid£187.50

* Charities pay a small fee for our service. Find out how much it is and what we do for it.