BuildR Better Life for Livie

We at BuildR are raising much needed funds to help get A Better Life for Livie. 


We have been really touched by her story and wanted to help by setting up this go fund me page seeking donations for this very worthy cause. Every donation will enter you into a draw to win a signed 2019 Monaghan jersey from 3 times GAA All Star Conor McManus.   

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. We are against the clock as Zolgensma is only available to children under the age of two years.

This is why Livie needs your help. Every donation you make will be an entry into a draw to win the jersey. Its very simple, Donate €5 and you'll get one entry, Donate €50 and you'll get 10 entries, so please donate as much as you can, we're sure you'll agree that it is a truly worthy cause.