A Derry boy with a rare disease had his dreams come true last weekend, thanks to a charity who transformed him into a rally driver for the day.
12 year-old Eoin Buckley, who was diagnosed with Charge Syndrome a short time after his birth, realised his life-long dream of becoming a rally driver after his father James contacted the Share A Dream Foundation.
The whole family were whisked awa
y to Ballinasloe for the weekend and everyone got a chance to enjoy themselves, including mum Marie who spent some well-earned relaxation time in the spa.
Charge Syndrome,, which affects roughly one in every 100,000 children has a number of different effects including heart and renal problems, delayed puberty, eye defects and growth problems.
"It is a really really rare disease and we haven't met anyone else in Northern Ireland who has it," Marie told the 'Journal.' "As far as we know, Eoin is the only one in Northern Ireland and there are only about 75 children in the UK and Ireland as a whole."
"He was diagnosed when he was born, although he went through a year of tests to confirm the diagnosis. When he was born he was pure black and had a big bubble where his belly button was supposed to be. He was taken away from us almost straight away and we were told that he only had 48 hours to live.
"He's still here 12 years later and it doesn't stop him doing what he wants to do, although there are constant trips to the hospital."
The family were recently told Eoin has extra problems with his heart, after he experienced chest pain and a fast heart rate. Dad James said the family need to raise £700 for a special heart monitor so the problem can be diagnosed properly.
"Eoin is sports mad and over the past couple of years I have been contacting football, cricket and rugby teams and boxers and they have given Eoin so much stuff. We are going to hold a raffle to give some of it away to raise the money. Anything extra will go to the Share A Dream Foundation, just to give them something back for the great time we had."
The Buckley family have never been offered support for Eoin's syndrome because it is so rare.
"Doctors here know so little about it and Eoin is usually made into a teaching case because they may never see another case like this in their lifetime. It does make him feel like a guinea pig sometimes, but if he can help another family who don't know anything about Charge then so be it."
Prognosis"We don't know what the prognosis is. Some people with Charge Syndrome live long happy lives but others don't," Maria said. "Eoin has his problems but it doesn't mean he will die this year or next. I am afraid of the unknown and what I could find out about the prognosis so we just enjoy what we have.
""Eoin has such a good attitude about it all. When the doctors find something else wrong, he just says add that to my list. We all have the same attitude and take each day as it comes."
