Gran pens song as baby fights for life

The gran of a five-month-old baby, who is bravely fighting for her life in intensive care, has penned a heartbreaking song about her 'princess’ to try and “tell the world about the number one genetic killer of infants”.
Little Millie Nelson from Woodview in Navan is currently battling the most severe form of the rare disease, spinal muscular atrophy (SMA), type 1, which causes the wasting of the voluntary muscles and impaired breathing.
Just a few months ago, doctors advised her parents, Lorraine and Gary, to secure palliative care for their precious daughter but they refused to give up and, with the help of social media, secured non-invasive treatment from a respiratory specialist and access to a machine to help Millie’s breathing. Unfortunately, Millie’s condition has deteriorated and she now is fighting for her life in the intensive care unit at Dublin’s Our Lady’s Children’s Hospital in Crumlin.
Through this hard time, Millie’s granny, Fiona May, penned emotional lyrics for her 'princess’ which has been put to music by Navan native and acclaimed musician and arranger, Andy O’Callaghan, and sung by RTE’s 'The Voice’ star Sharon Gaynor.
Fiona, from Parnell Park, said: “She has always been called Princess Millie, even before she was diagnosed. The two families were so thankful for her and so in love and then we were hit with the devastating news.
“When she was diagnosed with SMA Type 1, the words 'Song For Millie’ just kept going around my head so I finally sat down and wrote the song in a fairytale manner, complete with castles and clouds for our special Princess Millie,” she said.
“It was fantastic to get Andy and Sharon’s help and initially it was just meant to be a gift for my daughter, Lorraine, for her child. When Andy sent me the finished version, though, I thought it was too beautiful to lock behind doors and decided to try and use it to raise awareness of this crippling, cruel disease - a kind of progressive infant form of motor neurone disease - which robs parents too soon and too painfully of their little babies,” added Fiona.
She went on: “It’s the number one genetic killer of infants and Ireland doesn’t seem to know about it. Through this song, I want to let people know about it and rally for research into a cure. As far as we know, she’s the only baby to have survived SMA Type 1 this far in the Republic of Ireland.”
The touching lyrics include: “Every now and then, dreams will bring a princess. Magically enchanting in her every smile.”
Fiona says the chorus echoes the families’ constant prayers for a miracle when she wrote: “Butterflies and feather clouds, angels hear our voices loud. Daddy’s girl, your mother’s joy. Forever in our hearts as time goes by.”
Fiona added: “Millie is a fighter. She’s the only one that we know of to have made it this far with Type 1. Our little princess has us all behind her in her fight.”

See the song at www.youtube.com/watch?v=Ww8uLp88trk