A Better Life for Livie - Walk & Picnic Event
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The ‘Better Life for Livie – walk and Teddy Bear Picnic is a fundraising event to support Livie Mulhern, a beautiful little 9 month old girl who needs our help.
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.
Without any treatment, Livie’s condition will continue to deteriorate and it is unlikely that she would live past her 2nd birthday.
The best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA. It is the worlds most expensive treatment at a cost of US$2,100,000.
Livie's antibody test qualifies her for the treatment but we are against the clock as Zolgensma is only available to children under the age of two years.
So what is the Better Life for Livie ? – We are going to do a sponsored walk and Teddy bear's picnic a week before Livie's first Birthday to help raise vital funds to get her the treatment she urgently needs to improve her quality of life :
On Sunday 16th August, lets all do our best to come together apart by walking and having a teddy bear's picnic in support of baby Livie and most importantly donate to the attached go fund me page .
Please help this great cause by showing your support with a donation. Every donation counts to a Better Life for Livie.
To learn more about livie, her Mum Karen and Dad Keith and to learn more about SMA – check out her facebook page https://www.facebook.com/abetterlifeforlivie/
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.
Without any treatment, Livie’s condition will continue to deteriorate and it is unlikely that she would live past her 2nd birthday.
The best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA. It is the worlds most expensive treatment at a cost of US$2,100,000.
Livie's antibody test qualifies her for the treatment but we are against the clock as Zolgensma is only available to children under the age of two years.
So what is the Better Life for Livie ? – We are going to do a sponsored walk and Teddy bear's picnic a week before Livie's first Birthday to help raise vital funds to get her the treatment she urgently needs to improve her quality of life :
On Sunday 16th August, lets all do our best to come together apart by walking and having a teddy bear's picnic in support of baby Livie and most importantly donate to the attached go fund me page .
Please help this great cause by showing your support with a donation. Every donation counts to a Better Life for Livie.
To learn more about livie, her Mum Karen and Dad Keith and to learn more about SMA – check out her facebook page https://www.facebook.com/abetterlifeforlivie/
Organizer and beneficiary
Michelle Evans
Organizer
Team Livie
Beneficiary