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Parents launch appeal to save baby 'Livie'

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Baby Livie with parents Keith and Karen

Baby Livie with parents Keith and Karen

Little Baby Livie.

Little Baby Livie.

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Baby Livie with parents Keith and Karen

A Garristown mum and dad have launched a fundraising campaign for the world's most expensive drug - in the hope that the €2m treatment will save their baby's life.

Little Olivia (Livie) - the eight month old daughter of Karen Vickers and Keith Mulhern - has been diagnosed with a rare genetic neuromuscular condition called Spinal Muscular Atrophy (SMA) Type 1.

This condition causes nerves connecting the nervous system to the muscles to deteriorate and eventually cause the muscles to waste away.

Karen and Keith, who now live in Balrath, Co Meath, have said that despite Livie's condition she is a 'happy, smiling baby'.

Speaking to the Fingal Independent, Karen said Livie, who is nearly nine months, 'is in flying form'.

'That's the thing, she is still the same little baby she was when she was born.

'She's saying 'Mamma' and 'Dadda' now and laughing and smiling away. She loves being the centre of attention,' said Karen.

They also said they have been overwhelmed with the generosity so far of friends, family and complete strangers who have organised fundraising events and donated to their fundraising page on their Facebook page and Go Fund Me both entitled 'A Better Life for Livie'.

It was on April 9 when Karen and Keith received the devastating news that Livie has the rare genetic condition.

'It was on April 9 and with the lockdown it took a bit of toing and froing to get our appointment in Crumlin Children's Hospital,' explained Karen.

'And with the social distancing I was only able to go into the doctor with Livie so Keith had to stay at home.

;Within an hour they had clinically confirmed her diagnosis and we called Keith on my phone using the loudspeaker so he could hear too. It was very, very tough.'

Karen and Keith explained that they noticed there was something wrong when Livie was four and half months.

'At round the four and a half month mark, typically a baby at that age would be trying to roll themselves and lift their head up,' explained Karen.

'Livie was lifting her head a little bit but never for long periods of time and never fully up and I was mentioning it at various checkups but was told because she is such a healthy baby, perfect weight and good colour in her cheeks, keep going with the tummy time, she'll get there,' said Karen.

But, a month later, in mid-February, Karen and Keith noticed Livie had deteriorated with her head movement.

Karen explained: 'We noticed then she had deteriorated and couldn't lift her head at all.

'So initially her GP thought maybe it's something to do with her neck muscles.

'I got in touch with a physiotherapist in Trim who works with Enable Ireland and I sent her some videos of Livie playing on the floor and she said Livie looked a little bit weak and suggested we get her checked out by a paediatrician.

'So we got referred to a paediatrician who said to be sure lets get her into Crumlin Hospital and we were lucky we got an appointment fairly quickly which was great.'

Karen said she and Livie were there for half a day, but it was within the first hour doctors were able to diagnose Livie with SMA.

And now their best hope to give Livie every chance in life is a €2m drug called Zolgensa only available in America.

Livie's dad, Keith explained: 'Livie's condition is progressive so over time without any treatment the nerves connecting her nervous system will deteriorate and her muscles will grow weaker and shrink and lose function altogether.

'Up until the start of last year in Ireland, the life expectancy for children with Livie's condition would be two years of age and in terms of treatments options are limited.'

SMA was previously thought to be fatal in young children, but new once-off gene therapy called Zolgensma can provide a lifeline to young sufferers of SMA. But, the treatment is only available in the USA at a cost of €2.1m.

Keith said: 'We are now looking at the new drug in America - Zolgensma that has shown incredible results. Everything is very uncertain though as Livie's condition is very complex.

'Trials in the US have shown incredible results and the stories from parents of their children reaching milestones.'

Both parents said Livie 'is our world'.

'And like anyone, you'd move mountains for her. It's awful it's so expensive but it's our best chance for Livie,' said Karen.

And now the fundraiser has gone live, Karen and Keith have been overwhelmed with the generosity of people.

'Everyone is having a tough time as this is a really uncertain time for everyone and €2m is a lot of money to ask people to help raise.

'We could never thank anyone enough. Our families, our friends, our employers and the kindness of strangers is just incredible and unbelievable,' they said.

To donate to Livie's fund go to Go Fund Me or Facebook 'A Better Life for Livie.'

Fingal Independent