Story
Thank you for visiting my fundraising page. On April 21st last year, 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 have set up The Ciaran Buckley Trust because I want to support medical research into KID syndrome, for which there is currently no cure, and other related aspects of the disorder. I also want 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 he would have laughed his head off at the thought of his fitness-challenged family walking across the width of an entire country.
During May and June this year, my family and I will be walking the 780 km pilgrimage to Santiago de Compostela in order to raise money for Ciaran’s Trust. We will start from Saint-Jean-Pied-de-Port on the French side of the Pyrenees and walk for 4 weeks along the Camino Francés route to Santiago in the north-east corner of Spain. It’s going to be a challenge to say the least and I would very much appreciate any donations – I’ve set myself a target of £2,000 to raise, which feels wildly optimistic, but fingers crossed!
Many, many thanks for your support. xxx
*** Donating through this site is simple, fast and totally secure. It is also the most efficient way to donate: The Ciaran Buckley Trust will receive your money electronically and, if you are a taxpayer, an extra 28% in Gift Aid will be added to your donation at no cost to you. ***