Mum of the month - Karen Vickers 

Karen Vickers is a first time mum to daughter Livie (Olivia) who will be two years old in August. As a mum she has been tested more than most and did something extraordinary when faced with an unimaginable challenge. 

Karen’s little girl was diagnosed with a rare and serious genetic neuromuscular condition called spinal muscular atrophy (SMA) type 1. In a race against time, herself and her fiance Keith Mulhern began a life-saving fundraising drive to raise €1 million so that Livie could avail of a life-saving gene therapy drug - the most expensive in the world. She did that and then some, garnering the hearts of a nation and achieving the fundraising target. Caring for a seriously ill child with the added pressure of reaching out across the country to media, celebrities and the community at large to do everything possible to raise those final funds to save Livie puts many of our own difficulties in lockdown into context. She’s a mum in a million and it is such an honour to award her our May Mum of the Month with Beko.  

The family live in Kentstown in Co Meath and Karen, originally from Garristown in north Fingal, had a normal pregnancy and she and Keith were over the moon when Livie came along. She was a bubbly child, who was happiest when playing with her toys and enjoying her food however, Karen began to notice early on that she appeared to be missing key milestones in her development. When Karen voiced her concerns she was told that each child was different and the milestones would be met with time. 

However, in April last year just as the country was entering into the first Covid lockdown Karen and her family received some devastating news, which would alter their lives. Livie was diagnosed with SMA type 1. 

“SMA type 1 is a very serious genetic neuromuscular condition. It is degenerative and affects all muscles in the body. It impacts  the child’s movement and also the ability to eat, drink and breathe,” Karen explained.

Receiving this diagnosis in the midst of a global pandemic was incredibly difficult. Despite being highly vulnerable Karen was informed that Livie would not receive a Covid vaccine. So for the first year of her life she spent the majority of her time within her home with Karen and Keith. They only ventured outside for regular hospital visits and they were unable to seek physical support and comfort from family and friends.

“Livie motivates me, she fights this condition every second of every day. She gives me strength. She has endured so much for such a young age. She is always so happy, that I can’t help but be happy when I am with her,” Karen says.

After Olivia was diagnosed Karen and Keith began to discuss treatment plans with the medical team who explained that children who had the same condition as Livie had responded very well to treatment from the drug Zolgensma. However, they also told them that the drug was considered the most expensive in the world at $2.1 million and only available in the US. Karen and her husband decided to launch ‘A better life for Livie’ fundraising and awareness campaign on social media. Karen told us: “We had hoped that creating this page would also raise awareness of the condition, and that families who found out that their child had the same condition could reach out to us for support and advice.” 

‘A Better Life For Livie’ became a fundraising page, generating support from across Ireland, and also helped raise awareness about this condition. It has attracted widespread support from the media and the public with country stars Daniel O’Donnell, Nathan Carter and Mike Denver doing a charity concert to help their cause.

In October last year, the €1 million target was reached and Livie received her treatment and better still she had it here in Ireland. At that time Karen told her army of supporters: “We are incredibly grateful to the medical teams at Children's Health Ireland and St James for taking such good care of our baby girl. Livie is home now recovering; a little out of sorts but doing so well. We are so very proud of our brave little soldier.”

“We only imagined this day in our dreams, and can not believe we are here after months of incredible effort and support from all of you”.

By December Karen and Keith were looking forward to a very different Christmas: “Livie is recovering well from her treatment. She is still on medication but we can see signs that she is getting stronger already”, they announced. 

Reflecting on the journey Karen says she was comforted by the support they received.

“There is such a wonderful sense of community and coming together to help others. It makes me feel very privileged and proud to be Irish.” 

When asked what her hopes were for 2021 Karen said it was watching Livie grow in strength and health. She also wants to continue to raise awareness and help all of those in similar situations. “I want all carers in Ireland who look after vulnerable family members to receive the COVID vaccine as soon as possible and I want Ireland to follow other countries and introduce testing for SMA in newborn screening.” She’s achieved so much as mum to Livie and clearly she’s no intention of stopping yet.