Beautiful baby Livie needs our help to get life saving treatment not available in Ireland
A Donegal family is trying to raise €2million so their beautiful baby daughter can have a shot firstly at survival, and secondly at a better quality of life.
Nine-month-old Livie Mulhern is the daughter of Keith Mulhern and Karen Vickers, Donegal Town. She suffers from a condition called 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. 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 second birthday. Every child with SMA is different and little Livie’s future is very uncertain.
“Treatment options for little Livie are very limited,” said a spokesperson for her family. “Our best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in the USA. 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. We are against the clock as Zolgensma is only available to children under the age of two years.”
Little Livie was born on August 29, 2019, bringing immeasurable love and joy into the lives of first-time parents Keith and Karen.
But as Livie began to miss developmental milestones, concern set in and Livie was referred to Crumlin Children’s Hospital.
“Our world changed forever on 9th April when little Livie was diagnosed with SMA type 1,” write her parents on a gofundmepage set up to help Livie.
Due to hospital policy on social distancing, Karen was alone when given the diagnosis and Keith was alone when he heard the diagnosis over the phone.
“We were left devastated and one of the hardest parts of this process is being isolated without support from our family and friends during this difficult time,” they said.
Livie already needs to wear an oxygen mask every night. It is very unlikely that she will ever stand or walk.
A gofundme page has been set up to help Livie avail of treatment in the US.
“Zolgensma is our best hope to do this,” say her parents.
“If we are unable to raise enough funds to pay for little Livie’s treatment, we will put all donations towards Livie’s care with the hope of giving her the most comfortable and happy life possible.
Anyone who would like to make a donation can do so by going to the fundraising page https://www.gofundme.com/f/a-better-life-for-livie
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