"She is our world, and we want to do everything we possibly can to give her a better quality of life and a longer life"We cannot thank you all enough for all your kind words, texts, emails, posts, likes, shares and donations so far. Please keep sharing our story so we can do the very best we can for our smiley little Livie.Love Karen & Keith x"Cost remains the biggest barrier to receiving the treatment".https://www.gofundme.com/f/a-better-life-for-livie#teamlivie #abetterlifeforlivie #smatype1 #zolgensma
Posted by A Better Life for Livie on Thursday, May 28, 2020
A major national fundraising effort is underway to try secure funding for lifesaving treatment for a Co Meath baby with a rare condition.
Little Olivia ‘Livie’ Mulhern’s parents Karen and Keith are being supported by family members in Co Clare who are also doing what they can to help raise the money which, it’s hoped, will get Livie to the US for the specialist medical help she needs.
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. 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 and breathing, are becoming progressively weaker and shrinking. 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.
Treatment options for little Livie are very limited. Livie’s best hope for a better life for her to have a once-off gene therapy called Zolgensma, which is currently only available in USA. It costs approximately US$2,100,000 (€1.8m). Studies have shown that Zolgensma can substantially improve quality of life. Livie’s antibody test qualifies her for the treatment. We are against the clock as Zolgensma is only available to children under the age of two years.
To help Livie’s cause in the Banner County, family members are hosting a variety of fundraisers. They are running a hotel giveaway in Hotel Doolin and having a Trad Music CD hamper raffle.
One of the Clare organisers said: “We are in the process of organising another fundraiser called “Clare goes Pink for Livie!” This is a virtual 5km run/walk to take place on the August Bank holiday weekend. We are also organising another raffle called “The Banner Backs Livie.” This is a raffle made up of prizes from Ennis local businesses and I think it would be fitting to share especially as the shops are starting to open.”
Singer/songwriter and former Eurovision Song Contest winner Charlie McGettigan has also gotten behind the campaign.
It's Eurovision night!! 🎸🎻🎙🎹🎵And what better night to share a wonderful 'Live for Livie' performance of Rock 'n' Roll Kids with 1994 Eurovision winner Charlie McGettigan and Cathal Mulhern Thanks you so much Charlie, we welcome you to Team Livie!Please share far and wide to help us raise the money we need to make A Better Life for Livie 💕www.gofundme.com/f/a-better-life-for-livie#abetterlifeforlivie #teamlivie #rocknrollkids #eurovision2020 #gofundmeabetterlifeforlivie #smatype1 #liveforlivie
Posted by A Better Life for Livie on Saturday, May 16, 2020
You can find out more about Livie and donate here.