A Better Life for Livie -Solo Challenge with Rory
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The ‘Better Life for Livie – Solo Challenge with Rorys Stories’ 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.
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 – Solo challenge:
On Sunday June 28th, I will solo a football from Livies house in Balrath in Co. Meath to the village of Garristown Co. Dublin, where Livies Mum Karen is from.
It’s a distance of 25km. I’ve never ran more than 10k, so soloing a football that distance will be a great challenge.
On the day we’re also going to be supported by a number of Meath GAA clubs and their juvenile players also getting involved with the Solo Challenge.
With starting points from different parts of the county, the participating clubs will do a solo relay on the way to meeting me, Livie and her Mam and Dad near Balrath from where i'll take it the next 25kms.
I’m thrilled to have the support from Meath GAA and many juvenile teams.
On the day, our aim for the challenge is cover over 75km soloing a football.
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/
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.
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 – Solo challenge:
On Sunday June 28th, I will solo a football from Livies house in Balrath in Co. Meath to the village of Garristown Co. Dublin, where Livies Mum Karen is from.
It’s a distance of 25km. I’ve never ran more than 10k, so soloing a football that distance will be a great challenge.
On the day we’re also going to be supported by a number of Meath GAA clubs and their juvenile players also getting involved with the Solo Challenge.
With starting points from different parts of the county, the participating clubs will do a solo relay on the way to meeting me, Livie and her Mam and Dad near Balrath from where i'll take it the next 25kms.
I’m thrilled to have the support from Meath GAA and many juvenile teams.
On the day, our aim for the challenge is cover over 75km soloing a football.
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/
Fundraising team: The Rorys Stories Solo Challenge Team (2)
Ian Lynch
Organizer
Raised €1,735 from 43 donations
Team Livie
Beneficiary
Rory Connor
Team member
Raised €7,406 from 358 donations
