A BOY with a rare and incurable brain disease is the inspiration behind a fundraising and awareness campaign.
Kyran Richmond is thought to be only the third person in the North-East diagnosed with the terminal genetic disorder, Juvenile Batten Disease.
The condition affects mainly the nervous system and will cause eight-year-old Kyran to develop epilepsy, lose the ability to walk, talk, eat and see.
Loading article content
Ultimately he is likely to develop dementia and is not expected to live beyond his late teens or early 20s.
His parents Debbie and Carl, from Chilton, County Durham, and a group of friends and family have set up a fundraising team.
It will raise money for a trust fund to buy specialist equipment Kyran will need as his condition worsens.
Mrs Richmond said: "He was born healthy and when he was about six his eyes starting deteriorating, it is only recently we found out the full diagnosis.
"It was devastating, there is no cure and we can treat the symptoms but not the condition.
"He will become very dependent and though we don’t know exactly what the future holds its obvious he’ll need all sorts."
The team will support the only UK charity that helps families affected by the disease and facilitates research into it- the Batten Disease Family Association.
Members are now appealing to companies and organisations across the region to adopt their cause during 2012.
Kyran’s auntie, Mia Dailey, group secretary, said: "If people are trying to think of a charity to support all year we’d really appreciate them considering us.
"Kyran is going to need lots of stuff and the BDFA needs all of the support it can get."
Kyran is an avid Newcastle United fan, drama group member, loves animals and dinosaurs and enjoys attending Chilton Primary School.
Mr and Mrs Richmond, who have two others sons Cameron, 12, and Hayden, six, plan to make his life as comfortable and full of fun as possible.
Mrs Richmond said: "We’re at hospital appointments every other week. "Hayden is too young and Kyran doesn’t really understand but Cameron has taken it quite badly.
"We just have to try to stay positive and make family life as normal as possible.
"We want to do things together as a family and to have the best equipment available to give him as nice a life as possible."
A make-up and candle party night raised £700 and 140 tickets for a masquarade ball in March have already sold out but the team is busy planning more events.
For details or to offer support visit the website www.kyranrichmondfundraising.co.uk.