Story
Thank you for visiting my fundraising page. (Due to the fantastic support from all of the people donating so far I have managed to double my target - everyone's efforts so far has been truly inspirational)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On April 21st last year my son Ciaran died. He had been diagnosed with cancer five months previously. He fought this through a series of chemo 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 and his body could not fight any longer. 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 – a Braille reader from a young age – and was profoundly deaf. His skin disorder made it difficult for him to walk sometimes as his feet or knees would be sore and infected. Sometimes it is hard to imagine anyone living through this. However Ciaran was extraordinary – he attended schools at Sythwood Primary and Woking High and with various aids he learned in the same classroom as everyone else. He had terrific support from his teachers and fellow school friends and eventually got through his exams to win a place at
West
Kent
College – living in his own accommodation, independent and coping with life.
What I don’t remember is Ciaran ever having thought of himself as any different from anyone of us. His interests and his ambitions were just the same as any ones; the harshness of his disabilities did not deter him or were in any way deemed important in his life. He had the most wonderful character – full of jokes, getting into arguments with his sisters, playing jazz piano and saxophone and the inevitable immersion in reading, playing football, cricket and PS2 games! It was through e-mail that people would be surprised at how he could communicate with humour and depth of understanding – something he had difficulty in getting through to people when faced with not hearing or seeing well.
Although he had only just turned 18, as an adult, he touched so many lives – mostly without him knowing that he had – and although people would wonder at his amazing skills under adversity, they found that knowing him just simply made them feel happy. He had an amazing knack of making people laugh.
So – that is about Ciaran. What I would like to see is some legacy of such an impressive life – however short, it was a full life and it was a complete pleasure to have lived with him. We have setup a charitable trust through which we would like to support medical research into KID syndrome, for which there is currently no cure, and other related aspects of the disorder.
Although KID syndrome brought on these multiple disabilities it is thankfully rare – the Trust would also help those who suffer simultaneously from blindness and deafness as we found from experience that there are not many organisations that support these coincident conditions.
Lastly, we 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 4 weeks in 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 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 £2,500 to raise. I am daunted to say the least of the distance and the time we have to cover it, but I will feel supported by all of my family and friends at work and home along the way.
Thanks again. John.