Solo For Livie Challenge
28 June 2020; Rory O'Connor of Rory Stories during the Solo For Livie Challenge in Ballymagarvey, Meath. The fundraising event is in support of 9 month old Livie Mulhern, from Balrath in Meath. 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. The money raised from the event will be put towards a once-off gene therapy called Zolgensma, which is currently only available in the USA. It is the worlds most expensive treatment at a cost of $2,100,000. Photo by Ramsey Cardy/Sportsfile
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Sunday 28th Jun 2020
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