In the midst of this pandemic, we've all had our struggles but for Karen Vickers, she has had to contend with what's happening globally but also some tremendously difficult news about her daughter Olivia.
Olivia or 'Livie' as she's known to Karen and her partner Keith, was born in August 2019 and is on the surface a happy, bubbly and chatty baby. However, in April, she was given a heartbreaking diagnosis.
Livie has been diagnosed with SMA (Spinal Muscular Atrophy), type 1. SMA is a rare condition, affecting one in every 10,000 babies and type 1 is the most severe type. Due to the current restrictions, Karen had to receive the news while on her own while Keith had to hear the diagnosis over the phone and they have had to cope with this news without the physical support of their family.
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. In time, the muscles she uses for things like crawling, sitting up, moving her head and even swallowing and breathing will get progressively weaker. Without treatment, it is possible that Livie won't see her second birthday.
While there is no cure, there are treatments available. Livie has already received her first dose of 'Spinraza', a relatively new treatment that Karen and Keith hope will prolong Livie's life.
However, there is another treatment available in the United States that could be a game changer for Livie and her family. Zolgensma is the world's most expensive treatment and has to be administered before she turns 2 and the earlier she can get it, the better the results would be.
It costs $2.1 million and they are currently trying to fundraise this through a GoFundMe campaign.
Speaking to Dermot and Dave this morning, Karen explained that while it's an incredible target to try to hit 'we love our baby girl so much, and we just think it's her best chance at a better quality of life'.
Today FM listeners have been incredible since the interview aired, raising thousands in a very short period of time, and if you'd like to donate, visit the A Better Life for Livie GoFundMe page.
