Sunday 22nd May 2011

"A lot of people don't know what will happen in future but we know our future will be dialysis 3 times a week and then a major operation for a kidney transplant". That's Kian Crane's mum, Sarah, as she prepares to host a charity auction at the B2 net on Thursday night.

The auction will take place to raise funds for the Kidney Association which funds research into kidney disorders and treatments and Sarah is grateful that people have been more than generous in their donations. So far for auction is a signed Manchester United shirt, a signed Chesterfield shirt, Sheffield Wednesday match tickets and a signed canvas of Spireites legend Jack Lester.

There is also a host of other prizes including health and beauty vouchers and golf vouchers for courses including Grassmoor and Stanedge. Entry to the auction is free, and tours of the B2 net stadium will be available for £5 each on the night.

We spoke to Sarah and she told us about why they are holding the auction and why the kidney charity is so important to them.

Her son Kian is just 5 years old and has a rare genetic kidney condition that affects just 1 in 5,000 called Alports Syndrome. Sarah began by telling us about how it was discovered, "It was diagnosed after Kian had meningitis at the age of 2 and suffered a number of infections. A kidney biopsy was taken and the disorder confirmed."

She also told us about the disease itself, "Alport's syndrome is a rare genetic condition and tests have shown that both Kian's dad and myself have the faulty gene which causes it. There are 3 types of the illness and Kian has the autosomal recessive type which is the rarest."

It's a disease for which there is currently no cure, meaning that in around 8 years time Kian will face the prospect of kidney failure and, Sarah told us, it's not just his kidneys which will be affected, "The collagen in his kidneys is the same as the collagen in his eyes and ears so Kian will lose his higher level hearing and face changes in his eye pigmentation in a few years time too.

"He is to start medication next week that will help his body retain protein that is leaking from his kidneys but this isn't without complications. The meds he will take are given to people with high blood pressure and so there is no way yet of knowing how this will affect Kian."

There are other changes too as Sarah told us, "The meds will also mean that his potassium levels are high and therefore a change in diet will be needed, meaning that Kian will have to stop eating any tomato based foods which is hard for a 5 year old boy. His favourite food is Spaghetti Bolognese too which makes it harder."

It's been a tough time for Sarah and her family and she feels most for Kian, "He's been through a lot, he's only 5, it's devastating to know he had meningitis and then to be diagnosed with a rare genetic disease is heartbreaking. It's scary."

A transplant will be the only way forward down the line for Kian but neither Sarah or KIan's dad can be considered for that as they too have the gene and may themselves suffer kidney failure. All the family has tested and Sarah's mum or twin brother don't have the gene and the family is currently awaiting the test results from her dad. Sarah has two boys with her new partner and tests have revealed that one of them does carry the gene. The gene itself is rare but Sarah concedes that it is rarer still to meet and have a relationship with someone who has the same gene.

Despite this Kian is at school and Sarah says he is a happy little boy, "He enjoys playing with his friends and is happy at school but he does have hospital appointments with regular blood and urine tests. He doesn't like those but is getting used to them. He asks why he has them and all we can tell him is that he has poorly kidneys and that we are raising money to get the medicines that will make his kidneys better."

Sarah and her family are immensely grateful for all the help and support they have received towards the auction.

If anyone who reads this would like to donate a prize to the auction, please contact Sarah on 07801 941680 before Wednesday. Your help would be much appreciated by Kian and his family.

Kian's Charity Auction is at The B2net Stadium on 26th May 2011 at 6:30pm.

There is free entry to the Auction and a chance to buy tour tickets to look around the Spireites' Stadium for £5.

All moneys raised will go to Kidney Research UK for research into Alport's Syndrome.

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