A host of top Irish music stars including Daniel O’Donnell and Nathan Carter will take part in a six hour virtual concert on Saturday to help raise funds for a baby girl in need of life-saving treatment.
Little Livie was born with a rare neuromuscular condition and needs more than €2 million for treatment in the US.
Livie’s parents, Keith Mulhern and his fiance Karen Vickers who live in Co Meath, are calling for all possible support in their quest to save their daughter’s life.
Livie (Olivia) is nine months old and recently diagnosed with a rare and serious genetic neuromuscular condition called spinal muscular atrophy (SMA) type 1.
SMA is caused by a gene deletion which results in deterioration of Livie’s nerve cells connecting her brain and spinal cord to her body’s muscles. There is no cure and Livie has its most severe type.
Without any treatment, her condition would continue to deteriorate and it would be unlikely that she would live past her second birthday.
Treatment options for Livie are very limited.
The family’s best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA. It costs approximately US$2,100,000.
Livie’s story has touched thousands of people’s hearts worldwide and sparked a major GoFundMe campaign to reach the goal and give her the best chance.
Keith and Karen are against the clock as Zolgensma is only available to children under the age of two years.
Over €428,000 has been raised so far, with the couple saying that they are on a ‘long road’ but have got off to a fantastic start.
They are now hoping today’s concert, which is being organised by Newtowncunningham musician Alister McQuilken, will give them a further financial boost in their quest to get enough money for Livie’s treatment.
“She is our world, and we want to do everything we possibly can to give her a better quality of life and a longer life,” Karen said.
Click here to visit the GoFundMe page: https://www.gofundme.com/f/a-better-life-for-livie
