A Better Life for Livie- Sharpes Pitch Challenge

The ‘Better Life for Livie – Sharpes Pitch Challenge” is a fundraising event to support Livie Mulhern, a beautiful little 9 month old girl who needs our help.

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.

Without any treatment, Livie’s condition will continue to deteriorate and it is unlikely that she would live past her 2nd birthday.

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 is the worlds most expensive treatment at a cost of US$2,100,000. 

Livie’s antibody test qualifies her for the treatment, but we are against the clock as Zolgensma is only available to children under the age of two years.

So what is the Better Life for Livie – Sharpes Pitch challenge:

On Saturday 11th July, Derek ”Sharpe” Lynch plans to visit every single club in County Meath over a 24 hour period and kick a point/perform a solo at the gate of each club ground. There are 59 clubs in Meath and 65 pitches with a distance of 80km between the furthest pitch in the North- Meath Hill, to the South- Ballinabrackey, and another 80km between St.Brigids in the North-West to St.Colmcilles in the East so its no easy feat for Derek and his team !!

We will be keeping the Ballinlough GFC Facebook page updated with Sharpes progress throughout the day and we hope there might be a few people out at some of the grounds to greet him and cheer him on! Derek plans to kick his final point of the day in Ballinlough Football pitch and we encourage the local children to come down and help him complete the challenge!!

Please help this great cause by showing your support with a donation. Every donation counts to a Better Life for Livie.

To learn more about livie, her Mum Karen and Dad Keith and to learn more about SMA – check out her facebook page https://www.facebook.com/abetterlifeforlivie/