The parents of a much-loved baby girl with a rare neuromuscular condition have created a new video to share their heartbreaking story and plead for help.
Donegal Town man Keith Mulhern and his fiance Karen Vickers, who is from Dublin, 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 2nd birthday. Every child with SMA is different and Livie’s future is very uncertain.
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 €370,000 has been raised so far, with the couple saying that they are on a ‘long road’ but are got off to a fantastic start.
“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
Follow the fundraising updates on A Better Life for Livie