A little while ago I was Introduced to a man named Tony Heffernan. All I knew about Tony was he was a man who wanted to talk to me about doing some art work for his charity Battens or whatever I thought It was called at the time. That's how little I knew before I met this man, I thought Battens was just a charity name like Barnardos or Mrs Quinns Charity Shop! I didn't even read the book by the cover, I took a glance at it as If I was sitting In a doctors waiting room with an injury to both me eyes! To be terribly honest when I heard the name Battens I just thought In that little ignorant part of my head " Oh okay another charity amongst loads other charities". It's not like we go looking for new charities to support, we all dodge the "Hi, How are you? Can I stop you for just a minute" folk In the street with their commission hungry smiles and clicky pens. We are almost irritated to death by tacky radio adverts and annoying voice overs so much that they put you off the charity they are asking you to donate to. We are the split second sympathy generation with the ever so powerful Sky-Plus remote's In our hands that can quickly make the fly covered children in a Trocaire advert seem like ghosts on our screens that we forget we just saw. We have to ability to record and rewind live TV now but we never want to go back and watch our shitty conscience after we just watched it be a total prick from the comfort of our own couches.
I couldn't fast forward Tony, or bolt past him on a busy shop street saying " sorry gotta fly, can't stop, late as It is" I had to sit down and have a one on one meet about a charity I knew feck all about as did anyone I asked about it.
I didn't know what to expect or what I could even offer. I lacked confidence thinking my artwork was In anyway life saving or encouraging enough to ask people for their money or support.. All my worry for feck all once I met Tony. A true gent and a man that wears his heart on his sleeve and then asks you to wear his jumper. I was instantly taken with how much passion this man had and how his life has been turned inside out a thousand times over. I sat and listened as he told me what Battens Disease Is and what It does to a child and a family. I had read about It but when you hear a first hand account It tackles you to the ground and kicks you in the face. I was sitting beside a man who was asking me to help him with creating awareness for a charity he had no choice but to create with his wife Mary.
Tony and Mary had laid their daughter Saoirse to rest only 6 weeks previous to me meeting Tony. I couldn't comprehend the strength this man had, each word he spoke was held up with a crutch. I was In sheer awe of him and I began to get very confident In what i could do to help him. It's that thing with always backing the underdog and thats what Tony's charity was, the underdog. A charity that was set up to help children and family's who have Battens Disease, less than 1000 in the world. Out of the 6 billion of us there are 1000 suffers of this. Fuck that, sign me up and send me out on the front line.
Here Is a quick run down of how terrible this disease is. You have a beautiful healthy child who you adore and want to grow old with. The child grows each year as any other child, playing, laughing, being bold crying just been a child. Then one day a little spark goes off In their head and they their brain starts to slowly shut down unable to fix itself. The child's eye sight will go after It seeing the world for years before and their parents will have to explain and comfort them throughout. Their hearing and speech will eventually go along with all of their motor skills. Everything they once knew and had as a happy healthy child will fail them and there is a single tablet or medication In the world that can prevent it or slow it down. It is fatal and unforgiving. Tony and Mary had Saoirse for 5 beautiful years and held her as she slipped away on the 18th of January of this year. Having to let go of one child they refuse to do the same again with their little boy Liam who has the same condition as his sister. Liam who Is 2 will travel to New York next month for the treatment that may save his life. A long difficult surgery where 6 holes are made In Liam's brain and the chemical that his brain refuses to make will be artificially transmitted through his brain which will pass through his body helping to slow down and hopefully halt the conditions of the disease.
If you are reading this and think' feck this Is a bit heavy isn't it' well then imagine living with it. Imagine your child having it and ask yourself what would you do to save them. Imagine having a son or daughter with a disease no one really knows about so much so there are no special units In hospitals for it, no big charities raising the awareness for it and not one penny from the Government to support it.What a tough fight that would be and as I said earlier Isn't easy to turn the channel on an unknown cause than the one that we see and hear of all the time. So PLEASE help the Heffernan's by just simply spreading awareness. This Is not a cash donation thing, keep the hand In the pocket just take it out to copy and paste THIS website on your Facebook or blog. If you know a journalist tell them about it and spread it around. TELL PEOPLE. That Is all that Is asked of you. Don't turn the channel on Liam or his family that Is trying to save him.
Tony asked me to make an ad for him to create awareness. I was only happy to make it for him but I could not have done it without the help and talents of Albert Hooi. A true gent and a man with serious talent. This was the first time Al and I worked together and we had a tight time frame to get this done so It was the best we could do In 2 long days and nights. It was my first shot at an animated piece too which was a bit daunting but after a few million cups of tea and many a laugh It was awwwwright! We were delighted that the amazing Lisa Hannigan came a board and gave us the rights to use her beautiful song 'Lille' for the advert which suits It so well not only with the stunning music but the shivering lyrics also. So thank you for that Lisa.
Please watch the ad and post it on your Facebook page for us. We are aiming to get a million hits on Youtube before Liam's operation as our way of showing our support so PLEASE don't just read this and don't do it - DO IT! Sorry for being pushy I'm just pretty adamant about this.
For more info on the Charity and to see what you can do to help please click here at beeforbattens.org
CLICK HERE TO WATCH THE AD Please post the link on your blog or Facebook pages. Thank you.