Helping Little Livie
We all can do our bit in raising funds for the treatment and care of Olivia.
Little Livie who 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 breathing, are now becoming progressively weaker. 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.
The current 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 and this is where we all can help. Spreading the word and getting on board to help them achieve the required amount of money in such a short period of time. Studies have shown that Zolgensma can substantially improve quality of life and Livie’s antibody test qualifies her for the treatment.
However, they are against the clock as Zolgensma is only available to children under the age of two years.
Wild Atlantic Staycation Package
We all have been touched by this story and beautiful acts of kindness which have been shown to date – we couldn’t just stand in the background especially when we all have a unique way in which we may be able to help.
That being said we have reached out to several very kind local businesses that have been involved in many fundraising brainstorms over the years.
One Lucky Winner will be in with a chance of winning a “Wild Atlantic Staycation Package” which will allow them to experience the beauties that Donegal has to offer all while raising much needed funds for Baby Livie to go towards her life changing treatment.
We have teamed up with The Waterfront Hotel Dungloe, Arranmore Red Ferry, The Cove Arranmore, Rockshore House – The Island Life Experience (sponsored by Greenline Fruit & Veg) and many others to bring you this amazing prize.
All proceeds from this truly amazing competition are being donated to the “A Better Life for Livie” Fundraiser:
- 1 Nights Bed & Breakfast in The Waterfront Hotel
- 2 Nights stay in Rockshore House (Self Catering)
- Return Car Ferry trip to Arranmore Island with Arranmore RED Ferry
- 1 Nights Bed & Breakfast at The Cove Arranmore
- Voucher for The Wheelhouse Cafe, Burtonport
- A Meal for Two in The Bridge Inn/Serial Grillers
- 2 x Cocktail voucher on the Night by Coastal Cocktails
- 8 x Batch of Cocktails of your choice directly to your door
All prizes are not required to be used in conjunction with one another and the lucky individual who wins the prize will have full control on the booking of each prize (Subject to availability with Terms, Conditions & Service Fee Apply ).
If any Business or Individual wish to offer a donation to this fundraiser simple drop us a message via [email protected]
Should you wish to directly donate to the GoFundMe page which has been set up, please follow the link attached – https://ie.gofundme.com/f/a-better-life-for-livie