‘Olivia is just our world and €2m is a lot of money to raise but we just want to do everything we can for her’

The parents of a ten month old Balrath baby who was diagnosed with a rare life limiting condition are trying to raise €2million to access the world’s most expensive drug in the hope that it will save their daughter’s life.

In April Karen Vickers and Keith Mulhern got the life shattering news that their precious little girl Olivia or ‘Livie’ has 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.

Without any treatment, little Livie’s condition would continue to deteriorate and it would be unlikely that she would live past her 2nd birthday.

The family’s only hope 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 studies have shown that Zolgensma can substantially improve quality of life but time is running out as Zolgensma is only available to children under the age of two.

Livie’s heartbroken mum Karen spoke of her journey to date, saying:

“Olivia is our first born, I had a healthy pregnancy there were no issues, the birth was fine and she was very much a typical baby.

“We were watching out for her milestones like her first laugh and her first smile, she was just a very happy baby, really good with eating and sleeping and all of that.

“When she was three and half or four months we were looking at her motor milestones and she was never great at lifting her head she could never lift it fully up and I’d mention it at different check ups and they’d say every baby is different and she will develop in her own time.

“About a month or so later, it was just when the lock down had just started she seemed to get worse rather than better.

“She started to get quite stiff and very upset when she was on her tummy and not being able to lift her head at all so we were really concerned.

Karen who works in Primark head office in Dublin describes the heart wrenching moment Olivia was diagnosed with the devastating condition.

“I got back in touch with my GP and we were referred to Crumlin Hospital.

“With the lockdown it was just myself and Livie that were in Crumlin so my partner Keith was at home.

“They were doing observations of her and within an hour they had a clinical diagnosis of SMA Type 1 which I couldn’t believe because we had never heard of it.

“Never in our worst nightmares did we expect it to be something like this.

“They were telling us really devastating stuff like four years ago there was no treatment and babies just didn’t survive and it was a muscle wasting condition where the nerves send signals to your muscles using this essential protein that Olivia didn’t have because she is missing the gene that generates this protein.

“It affects all your vital muscles that you would use for using your arms, legs, neck, your back, your swallow, your breathing.

“It was pure devastation.

“The consultant in Crumlin spoke to us about the options available.

“They have a treatment in Ireland called Spinraza it is given through a lumber puncture in the spine and what that looks to do is remove some fluid and put in some of this essential protein that Livie is missing so it hopes to slow down the progression.

“But they were explaining to us about managing expectations that it would slow it down but her swallow and breathing would need intervention that would continue to progress and get worse.

Livie has received her first dose of it and we are hopeful that it will prolong her life and allow her to gain a degree of head control and sit with extra support.

“They also mentioned another treatment called Zolgensma, which is only available in the states.

NOW READ: Rory's Stories star to lead 25km Solo Challenge to help make a 'Better Life for Livie'

“This is a one-time treatment, it is the same procedure, it is a lumber puncture but it aims to give a copy of her missing gene and produce the protein that she needs to have muscles working.

“We started to look into it and started to look at some clinical trials of the drug and just looking at the stories of parents whose children received the treatment it was just incredible, some children were walking, some children that were choking on food and drink, when they got the treatment they were able to swallow again.

“This has changed our world and what we thought our world would look like when we got the diagnosis but she has been the very same baby from day one.

“She is a lovely happy smiley little baby, always in good form and always smiling and that’s the thing, her cognitive ability is not affected by this.”

“She is just our world and it is very hard because it is a lot of money to raise but we just want to do everything we possibly can for her.

“When we found out the cost of the drug we couldn’t believe it; it is tagged the world’s most expensive drug.

“It could be any amount of money but we just want to try.”

There has been a multitude of fundraising events throughout the country to help little Livie get to the €2m mark including the Solo Challenge with social media star Rory’s Stories and Meath GAA.