The bittersweet news that could hold the key to a ‘Better Life for Livie’
The parents of a ten-month-old Balrath baby who have been fundraising to access the world’s most expensive drug in a bid to save their daughter’s life received the bittersweet news this week that an incredible €1million will be pledged towards the cost from another family whose little boy with the same condition is sadly no longer a candidate for the treatment.
In April Karen Vickers and Keith Mulhern got the life shattering news that their precious little girl Olivia had has Spinal Muscular Atrophy (SMA) Type 1, a rare life limiting condition.
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 has since been trying to raise an astronomical €2m to access the treatment.
In a sad turn of events this week, Livie’s campaign benefited from an incredible gesture from another family fundraising for their son Dan, who also has SMA.
The Donoher family in Laois launched the “Do It For Dan” campaign in March and reached their target in a matter of weeks, only to learn the heart-breaking news that Dan has contracted a rare virus in recent months that has led to him developing antibodies which will stop the intended fusion treatment in America from working.
They have now pledged €1million of the money raised for Dan toward the cost of Livie’s treatment.
“We cannot thank the Donohers and the team behind Do It For Dan enough for this," said Karen. "It restores our hope that we may actually get there."
“We still have a long road ahead to raise the rest of the funds, but when we do, we will finally be able to pay for Zolgensma, giving our gorgeous little Livie the greatest chance at life.
“Now more than ever, your support and help is needed to get to €2m.
“Please continue to share Livie's story on social media and wherever you can.
“We are praying that we can do this for Livie for her 1st Birthday at the end of August.”
It follows a multitude of fundraising events throughout the country to help little Livie get to the €2m mark including last weekend’s Solo Challenge that saw Rory O'Connor of Rory's Stories fame solo a football 25km from Ballymagarvey Village in Balrath to the village of Garristown where Livie's mum Karen is from.
Eleven Meath clubs and Garristown GFC in Dublin came together along with Rory in support of Livie to help her towards the target.
Spirits could not be dampened despite the wet weather and those taking part received a huge amount of support from the public to turned up to cheer them on.
It’s understood that an incredible €20,000 was raised from the event that will go towards the family’s only hope for Livie, 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.
“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 we didn’t 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.
“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 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.
“It could be any amount of money but we just want to try.”
Pictured: Rory O'Connor aka Rory's Stories with Karen, Keith and baby Livie at Ballymagarvey Village last Sunday. PHOTOS: SEAMUS FARRELLY