Fundraiser For A Better Life for Livie

Having seen the social media posts lately about raising funds for the treatment and care of Olivia, myself and a few of the Fermanagh GAA players have decided to try our best to raise some much needed funds by either dying or shaving our hair.

Little Livie has been 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. Livie’s muscles used for activities such as crawling, walking, sitting up, moving her head, and even swallowing and breathing, are becoming progressively weaker and shrinking. Without any treatment, little Livie’s 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 little Livie’s future is very uncertain.

Treatment options for little Livie are very limited.  The 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. Studies have shown that Zolgensma can substantially improve quality of life. Livie's antibody test qualifies her for the treatment. This fundraising campaign is against the clock as Zolgensma is only available to children under the age of two years.

Any donation no matter how big or small is greatly appreciated and please share this link or the link to the main go fund me page.

Thanks