Determined to turn dream of 'Billy's World' into a reality
Published 17/06/2014 | 05:40
IT'S just over a year ago since Tony Byrne and his wife Cora lost their child, Billy.
He was just a week short of his sixth birthday when he passed away at Temple Street Children's Hospital in Dublin.
Billy had Pallister Killian Syndrome, a rare developmental disorder that affects many parts of the body.
Life expectancy is normal but Billy succumbed after failing to recover from influenza.
Dad Tony recalls: "Billy got a very bad bout of 'flu. He attended Sligo Regional Hospital before being transferred to Temple Street Children's Hospital.
"Unfortunately, it developed into pneumonia and subsequently organ failure."
Billy was only one of three in Ireland with the rare chromosome disorder.
There are less than 300 children in the world with it.
"It took a while before Billy was diagnosed with it and it was certainly a shock," said Tony.
The condition isn't hereditary
Having not met his developmental milestones and plenty of investigations and procedures, Billy was diagnosed with PKS at just 13 months
He passed away on March 24th 2013.
"We obviously miss Billy and we think of him from time to time.
"We have our moments," says Tony who runs his own transport business in Carrick-on-Shannon.
Wife Cora is from the Leitrim side of Carrick while Tony is a native of Dublin.
They have three other children, Ross (18), 10-year-old Cadhla and three-year-old Ruby.
The shock of losing a child is something that will stay with the family forever.
Tony is determined that Billy's memory will live on in a lasting legacy.
Long before he passed away, Billy's parents thought about creating a theme park where families with special needs children could go on holiday.
Tony says: "The idea was based on our holiday experience with Billy.
"We liked to go on holidays but it was often the case that he looked on and we found that a bit unfair.
"We didn't just want for him to be sitting on his own in a seat. We holidayed a lot at home and this was okay when he was young but we were wondering what will happen when he reaches 13.
"We were carrying him to the pool which was fine when he was small.
"I kept saying there must be somewhere in Ireland for us to go on holiday as a family with Billy, particularly when he got that bit older.
"I did some research and I got to learn there was a demand.
"There is some 360,000 families with a child receiving some treatment in Ireland.
"There's nowhere special for them to go on holidays here.
"Yes, there are plenty of places to go to but they're just ticking the legal box as regards accessibility for those with disabilities.
"That's where it stops, there's no inclusion as such."
Tony's ideas led him to setting up Billy Byrne National Children's Charity. He has one simple dream, to set up Billy's World.
It will be a theme park like no other in Ireland aimed at those families with children who have special needs.
"It will be one break a year, the family deserve a holiday, not to be cocooned on their own but to be away together with the child.
"We want it to be a home from home which will allow the family to function as normal. Too often children with special needs are unable to participate in what is going on.
"Billy's World will be about the child.
"It's going to be a fun park but this one will be all about inclusion.
"Everyone just ticks the accessibility box, this is going to be much more," he says.
Billy's World will be non disorder specific says Tony and one of his biggest challenges will be to try to bring the country's charities on board.
"I want to form a partnership with them to build this facility.
"None of the charities can justify a project on this scale on their own but collectively it makes sense," he says.
Plans for the park include cinema/theatre, sensory room, hydrotherapy pool, soft toy play area and picnic area.
Like other theme parks it will have various rides while are there also plans for a cafe and bar.
Tony has identified four sites of 10 acres in the Carrick-on-Shannon area as suitable while he reckons it will cost €5 million to build.
Some of the leading national charities have already warmly received the idea and Tony says the project will proceed in conjunction with them.
"It's a huge, ambitious project," admits Tony but he says the drive and determination to succeed is still there despite Billy's passing.
"It was never about us," says Tony.
Billy's World, if it becomes a reality, would certainly be a great tribute to Billy and the satisfaction will also come the many families who will be able to use the park and enjoy themselves.
Tony sees the various charities coming on board to use the theme park at set times.
"There could be for instance a Jack and Jill weekend," he said.
Fundraising in post recession Ireland is not going to be easy but Tony says he's determined to succeed.
Tony says: "People are getting to know about us now and are enquiring about us via our web site and Twitter.
"I know charities are struggling and money is tight. It's about convincing people that it is needed."