By David Hennessy
The bereaved family of a child with special needs are striving to create a theme park in the Leitrim area where the needs of special needs children can be met allowing the whole family to enjoy their time together.
Billy Byrne from Carrick-on-Shannon was diagnosed with Pallister Killian Syndrome, a very rare chromosomal disorder that has only 2-300 cases worldwide and only three in Ireland. Billy and mentally and physically disabled and although Billy couldn’t hold himself up unaided, he could communicate with the family by smiling and laughing. Sadly, Billy passed away on March 24 2013, a week short of his sixth birthday.
Now Tony and Cora, Billy’s parents, and his siblings Cadhla and Ruby are working on a project called Billy’s World. The Byrne family wish to provide other families with opportunities they never had themselves to enjoy as a family. In addition to being a theme park, the family hope it can take conferences, lectures and events that give parents advice and information and raise awareness of the many conditions that affect children in Ireland.
Billy’s father Tony told The Irish World why such a facility is so badly needed: “The vital thing is the emphasis being on the family. It’s very important that every family gets an opportunity to feel like a family for some section of the year certainly from a holiday perspective. We’re all entitled to take a break away so there’s no reason why families with children with or people with rare conditions don’t get that opportunity as well. It’s very important.”
The family took holidays with Billy and while it was straightforward as a baby, it was more difficult as he got bigger. Even staying within Ireland, they found facilities ill-equipped. Tony looked for something specifically for special needs children and found nothing. He knew he had to build it himself: “The idea or concept was born prior to his passing. I suppose it’s based on our own personal experiences of taking a holiday with a child like Billy. I suppose we used to find that he looked on while we took the holiday and didn’t find that very fair. He’s passed away since but it was never about us as a family anyway. There’s nothing in it for us now but if we can give something back to the thousands of families out there who could avail of something like this, it would give siblings and families the opportunity to build memories together and that’s of vital importance.
“After all, the child or the person is part of the family so there’s no reason why they should be sitting on the outside looking in while the rest of the family takes a holiday or a break away.”
The concept of Billy’s World is to be a home away from home where all the kids can take part in different activities. It would include indoor activity rooms, a cinema, a hydrotherapy pool, gym and much more. Already Tony and his team have suitable sites earmarked and are trying to raise the €5million it will take to build.
Tony continues: “There’s still a long hard road ahead, there’s no two ways about that but you just don’t know who will read an article, watch it on TV or just walk through the door, there’s always people who are game changers. As time goes by so please God, we’ll keep progressing.
“People are absolutely blown over, love the idea, love the concept. Everyone will tell you it’s badly needed. Everybody’s willing to help to some degree so you can just hope that that continues long term. We need to raise extremely vital funds in order to do it but hopefully people put the shoulder behind their enthusiasm and help us do that as time progresses. The local community and the wider community have been fantastic. I just hope that they keep up the good work.”
There will be fundraising events taking place throughout the year with a team going to New York to run the New York marathon for Billy in November.
For more information, you can go to http://www.billysworldireland.com or call 00353 71962 0972.