A Better Life for LivieMay 14, 2020 ADMIN 0
Little Livie was born on the 26th August 2019, the first born to mum Karen from Garristown and dad Keith from Donegal. Livie’s grandad Pat Vickers is from Balbriggan. Livie missed some of her development milestones so her parents contacted her GP who referred them Crumlin Children’s Hospital. Their world changed forever on 9th April when little Livie was diagnosed with SMA type 1. This condition affects approximately one in every 10,000 babies.
Livie’s muscles used for activities such as crawling, walking, sitting up, moving her head, and even swallowing and breathing, are becoming progressively weaker and shrinking. Without any treatment, little Livie’s condition would continue to deteriorate and it would be unlikely that she would live past her 2nd birthday. Every child with SMA is different and little Livie’s future is very uncertain.
You can donate online by clicking here
Treatment options for little Livie are very limited. The best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA however, it costs approximately US$2,100,000. Studies have shown that Zolgensma can substantially improve quality of life. Livie’s antibody test qualifies her for the treatment but they are against the clock as Zolgensma is only available to children under the age of two years.
This has been a really hard time for Livie’s mum and dad especially with the COVID-19 lockdown. Due to hospital policy on social distancing, Karen (Livie’s mum) was alone when given the diagnosis and Keith (Livie’s dad) was alone when he heard the diagnosis over the phone.
Livie’s parents are fundraising for Zolgensma because they could never afford to pay for this treatment by themselves. Their dream for Livie is to give her the best chance at life possible. Zolgensma is the best hope to do this.
Please support the fundraiser for Livie, every little helps no matter how small.