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Funds being raised to help Little Livie get world’s most expensive drug

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Olivia Mulhern was born on the 26th August 2019. On April 9th, of the following year, Little Livie was diagnosed with Spinal Muscular Atrophy (SMA) type 1. This is the most severe type of SMA, effecting approximately one in every 10,000 babies.

Nerve deterioration inhibits her from performing basic everyday such as grabbing, turning her head and swallowing. Babies suffering from this disease rarely live past their second birthday.

A ray of hope has been cast on Little Livie’s situation, with a breakthrough treatment available in the USA. Known medically as Zolgensma and less formally as ‘the most expensive drug in the world’, this treatment comes at quite a cost, $2.1 million in total. A Go Fund Me has been set up to help get Olivia and her parents, Karen and Keith to the USA. A dose of Spinzara treatment through a lumbar puncture here in Ireland will hopefully prolong Livie’s life long enough until the €2m milestone has been reached.

Olivia’s Clare based cousin, Caoilfhionn Mulhern is running a number of local fundraisers to assist her little cousin. With all hands-on deck, Caoilfhionn mentions a number of ways that the Clare community can help Little Livie receive lifesaving treatment:

Her brother Daire, a traditional music lover is currently running a music CD hamper competition entitled ‘CD’s for Olivia’, which can be found online as a separate Go Fund Me. Caoilfhionn is running a stay for two at Hotel Doolin at the moment. The competition is being shared on the Hotel Doolin Facebook page and links to another Go Fund Me called ‘Hotel stay for Livie.’

The big one that the family are really hoping to take off is on the August Bank Holiday weekend. It is wear pink and run or walk 5k, whereby participants donate €5 at the end of their journey. There are loads of prizes provided by local Clare businesses for a raffle entitled ‘A better life for Livie’. These are from places such as Willow, YOLO, The Delivery Guys, Young Interiors, Blackbird, Maddens Furniture, Foxy Hair and much more.

On the journey so far and what lies ahead, Ennis native and cousin to Little Livie, Caoilfhionn Mulhern delegates, “The generosity of local businesses is something that is so important to highlight. Anybody that we contacted was so forthcoming and so willing to help, be it a share on their Facebook or social media, a donation of a prize or a personal donation. The Clare community has been wonderful in trying to help Olivia. It took us six weeks to get to the halfway mark and we certainly have a long way to go. We are so grateful for everything everyone that has been done so far.”

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An avid reader from a young age, Cian’s love of the archives has been shared by Clare Echo readers who enjoy his Reeling in The Years section. Charles Dickens, Terry Pratchett and Michael Crichton were his favourites writers in his younger years while he was always a fan of studying the opinion columns in The Irish Independent. A past pupil of Lissycasey National School and St Flannan’s College, he is currently completing his final year studies at the University of Limerick in New Media and English. From September, he will be commencing a Masters Degree in Journalism at UL.

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