|Leighton and Judy with their darling children, Evan and Lily-Mae at the recording of Tiny Dancer, a Song for Lily Mae.|
To be quite honest, our family is scattered generously across Ireland, the UK and a little further, so I hadn't even met Lily-Mae before she got sick, as they lived in Galway and at the time, I was living in Cork.
She may have been a tiny baby at a family funeral, but I did not know the little girl she had become.
I'm not going to pretend that we were all like peas in a pod, but for those of us who knew Lily-Mae and Evan and for those of us who met her after her horrible tale with wicked cancer began, her story and her plight touched all of her hearts and we wanted to do anything we could to help.
My sister's boyfriend organised comedy gigs in Kilkenny, others took part in marathons, runs and walks, others sold CD's for the charity single and we all did what we could to help out.
As part of her aggressive treatment, Lily-Mae, this tiny, fragile and adorable four-year-old, was travelling to Dublin regularly and it was my aunt's house where I first met her and really got to know her, both as my tiny cousin and the little darling the whole nation and most of the world were soon to fall in love with.
Lily-Mae's sweet nature, those eyes filled with wonderment and the possibility of tomorrow and her willingness to perform and take centre stage at every given opportunity - these were the traits, which endeared her to the nation.
With tubes coming out of her, tablets the size of marbles and more pain than any child should have to endure, Lily-Mae still wanted to perform, to have everyone smile at her and clap. To be the main attraction for the duration of her one-woman show (though sometimes Evan was given a token supporting role - as they have aged, their performances have become more like equal duets, as her little brother is coming into his own, both as a little boy and as a performer).
I remember it vividly, she sang a little song, which had terribly complicated lyrics, which I would struggle to remember and an accompanying dance. That night, she told her mother that her cousin could come in and say goodnight - even while feeling poorly, she was a formidable little lady, so I went in and was told in the sweetest and most hilarious way that I 'may kiss her good night on the cheek'.
From that day, she had a special place in my heart and as I read the updates from Judy on her own Facebook page and through the Tiny Dancer A Song for Lily-Mae page, I almost felt her pain, as I read about tests, infections, medication, treatment and how Lily-Mae would have to travel to America to have a true chance at fighting Neuroblastoma.
It was at this point that the strength, resilience and resourcefulness of Leighton and Judy shone through. With the help of Judy's family and particularly her brother Paul Hayes and their combined contacts in the world of show business, dancing, theatre, music, production and media, they soon had an army of people who wanted to do what they could to raise the funds to take Lily-Mae stateside.
Tiny Dancer A Song for Lily-Mae was recorded on September 30, 2012, just months after Lily-Mae's diagnosis, in The Black Box Theatre in Galway. Countless people gathered together to add their voice to the song, which could help break down the barriers and raise awareness of childhood cancers like Neuroblastoma.
Despite how awful and harrowing each passing day must have been, Judy and Leighton were valiant in their efforts and in their fearless PR campaign. They went on television shows, they were in the news regularly, pictures of their family were scattered liberally across newspapers in Ireland and further afield and Judy's voice on the airwaves became a regular feature.
As a journalist in the print media, I know that it is no easy feat to talk on the radio and throughout my career, I have been on the radio many times (the first article on this blog about childhood cancer was followed by me speaking on Cork's 96fm with PJ Coogan), so I can only imagine how hard it is to open up your life to public scrutiny and let the media into your sitting room, all for the greater good of raising funds and awareness.
When a child is hurt or needs help, their parents will do anything they can to ease the pain or make the problem go away, but what Judy and Leighton did was amazing and went beyond all expectations. They put themselves out there and brought the plight of their little girl into every sitting room, office, school, creche and bus.
The stellar fundraising campaign raised 420,000 Euros. While Lily-Mae is now quite healthy, there is a 70% chance that she will relapse and if this happens, funds will be needed to bring the little girl to Europe or America and if she does not relapse, the money will go towards the Neuroblastoma Society.
Neuroblastoma is a rare an aggressive form of childhood cancer, which affects one in every 100,000 children in Ireland.
Many of you, my readers, will have seen Lily-Mae on television, on the news, in videos and have gotten to know her through social media, as we all went on the journey with her.
For those who don't know her, she is a little performer, she wants to be a ballerina when she grows up, she likes fairies, dinosaurs and the colour purple. One of the aims of the campaign for Lily-Mae was to raise awareness about Neuroblastoma, so that it would be a cancer that people wouldn't have to Google.