North West sends support to baby Livie as fundraisers aim to help provide treatment for rare condition

Olivia ‘Livie’ Mulhern, the adored daughter of Karen and Keith, who is originally from Donegal, was recently 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 the nerve cells connecting Livie’s brain and spinal cord to her body’s muscles.

Livie, who is eight months old, has the most severe type and her muscles are becoming weaker. Doctors have told her parents that, without treatment, she might not live past the age of two.

Treatment options are limited and Livie recently received her first dose of a treatment called Spiranza. It is hoped this will give her better head control and prolong her life. But, she will still need respiratory and feeding intervention and the drug works in 60% of those who receive it.

However, a new gene therapy treatment with ‘incredible’ results is available in America. Called Zolgensma, it costs approximately $2,100,000. The treatment is only available to children under the age of two and as Livie’s condition continues to progress, time is of the essence. Karen and Keith, who live in Meath, spoke to the ‘Journal’ about their fundraising campaign, which has so far raised over E400,000 and the support they have received from around the country. Fundraisers included a concert from Daniel O’Donnell, which featured a host of other acts such as Nathan Carter and Dominic Kirwin and include local singers and musicians like David Craig, David James, Simon Peters and more. Karen described Livie, the couple’s first child, as a ‘happy’ little girl, who is ‘full of mischief.’

“She loves being in the thick of everything and loves her food. She is such a funny, friendly wee baby and makes things so much easier for us.”

The couple became concerned that Livie wasn’t meeting her milestones as well as she should.

“When it’s your first baby, you’re looking out for milestones, like their first smile and laugh. Livie was doing all that, but on the motor development side, wasn’t fully lifting her head. Everyone told us to keep going with tummy time, but just around the time the lockdown started, we found it was getting worse, not better and she was leaning a lot to the right.”

They consulted their GP and Livie was eventually referred to Crumlin hospital. Due to coronavirus restrictions, Karen had to attend Crumlin alone and within the hour, Livie was clinically diagnosed with SMA.

Keith had to be informed over the phone. The couple were ‘devastated’ and the ‘picture painted by the doctors wasn’t great.’

The couple knew they had to ‘go for’ the treatment in the US, which would give her both length and quality of life. The treatment will give Livie a ‘functional copy’ of the gene that does not work for her and enable her body to produce a protein, that will help her nerves to connect to her brain and muscles, to stop deterioration.

Clinical trials have shown ‘incredible results’ but, with treatment needing to take place before Livie is two years old, they are ‘against the clock.’

The couple has been ‘amazed and so grateful’ for the support so far, particularly as it is coming in the middle of a pandemic and mainly via social media, as well as their family, friends and workplaces.

They say that, following Livie’s diagnosis, the lockdown and worry over COVID-19 - Livie is very high risk - the support they have been given and the fundraising efforts of so many, have given them a ‘real lift.’ While the amount raised so far is incredible, they still ‘cannot look back and fully see what has been raised’ as the goal of two million is still ahead.

“What has been raised is fantastic and we can’t believe it,” said Keith. “But the road is so long. We just want to keep spreading the word. Honestly, every little helps and we just want to help our little girl.” You can follow Livie’s story on the ‘A Better Life for Livie’ Facebook page and donate at www.gofundme.com/f/a-better-life-for-livie.