I'm very sorry to announce that our little friend Harley sadly passed away today after loosing his battle with his extremely rare disease lukodysrophy he was the only person in the <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:place w:st="on"><st1:country-region w:st="on">UK</st1:country-region></st1:place> to have it and there was no known cure.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
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Deepest sympathy to his Mum and Dad plus the rest of his family at this very sad time. Andy
Funeral is at 12 in Cottingham (East Yorkshire) if you can will you just think of this little boy and his greiving perants around 12 noon on Friday next week, better yet you can if you will ware a yellow ribbon or if you'd really want to release a yellow balloon with a message to Harley on it (yellow is the colour of the support group that deals with Harlyes' illness)
I'll be attempting to attend the funeral and so will a few others from our club (on our bikes as requested by Harlys perants well he was a member of our club too) we are going to meet there around 11:30 as far as I know, any more details wanted please PM me I will have more next Tuesday!
Sorry to hear the news Andy, I know he was a lil one close to your heart & you have kept us up to date all the way along with fund raisers & his progress.
Mine & Ian thoughts to his parents & family, such a bright light will always shine on in their hearts & memories