A Better Life for Livie: Irish family trying to raise 2 million for daughter's medical treatment 2 years ago

A Better Life for Livie: Irish family trying to raise 2 million for daughter's medical treatment

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Keith and Karen Mulhern are currently raising funds for the treatment and care of their daughter Olivia also known as Livie.

Little Livie has been diagnosed with a rare and serious genetic neuromuscular 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 2nd birthday. Every child with SMA is different and little Livie’s future is very uncertain.

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Treatment options for little Livie are very limited. Our best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in 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.

Livie's family are against the clock as Zolgensma is only available to children under the age of two years.

As it currently stands the family have raised a quarter of the funds that they require but they still need help.

If you would like to support A Better Life For Livie you can donate through the A Better Life For Livie fundraising page.