We are completing a 1500km challenge to raise funds for the treatment and care of baby Livie.  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 will continue to deteriorate and it's  unlikely that she would live past her 2nd birthday.  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.

Every donation is a step closer for the family to get the treatment needed for Livie. Please support.

Livies Main Fundraising Page 

https://amp.independent.ie/irish-news/her-smile-would-melt-the-room-but-the-clock-is-ticking-fundraiser-for-baby-livies-2m-live-saving-treatment-39197295.html