A walk in the park... if only!

Sally Buckley is raising money for Ciaran Buckley Trust
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Royal Parks Half Marathon 2008 · 12 October 2008 ·

The Trust raises funds in memory of Ciaran, who suffered from a genetic skin disorder called Keratitis-Ichthyosis-Deafness Syndrome (“KID syndrome”). The Trust aims to help people with similar conditions, as well as supporting research and promoting awareness about the difficulties of living with the multiple disabilities of blindness, deafness and skin disorders.

Story

Thank you for visiting my fundraising page. On April 21st 2006, my brother Ciaran died. He had been diagnosed with cancer five months previously. He fought this through a series of chemo and radiotherapy sessions and all seemed to be going well until he developed double pneumonia. He died five weeks later suffering from Acute Respiratory Distress Syndrome. It was just another part of his struggle for life, but one that overcame all his energies.

Since birth, Ciaran had suffered from an extremely rare genetic disorder called KID syndrome – the acronym stands for the medical terms of corneal infection, skin disease and deafness. Ciaran was visually impaired and profoundly deaf. His skin disorder made it difficult for him to walk sometimes as his feet or knees would be sore and infected. If you didn't know Ciaran, it is hard to imagine anyone living through this, but Ciaran was extraordinary in every way. He had only just turned 18 when he died, but he had already touched so many lives, so what I wanted to do was create a legacy for his short but very precious life.

I set up The Ciaran Buckley Trust because I wanted to support medical research into KID syndrome, for which there is currently no cure, and other related aspects of the disorder. I also wanted to raise money to help other people who might suffer from KID syndrome but because it is thankfully so rare, to also help those who suffer simultaneously from blindness and deafness as my family found from experience that there are not many organisations that support both conditions at the same time. Lastly, I also want to actively remember Ciaran because I know that he was a very special person to a lot of people and personally, because he inspires me to do things that I did not think were possible for me to do.

So having already climbed Kilimanjaro this year in aid of the Trust, I have decided that the best way to recover is to run a half marathon.  I have set myself a fundraising target of £500 so your donations, as always, are very much appreciated!

Many, many thanks for your support. xxx

***  UPDATE  ***

A massive thank you to everyone who has sponsored me so far and due to such fantastic support, I am raising my target to £1,000.

***Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: The Ciaran Buckley Trust gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.***

Donation summary

Total
£1,120.00
+ £273.59 Gift Aid
Online
£1,020.00
Offline
£100.00

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