Convince the HSE to treat Livie in Ireland
This petition made change with 8,870 supporters!
Olivia "Livie" Mulhern 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.
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. For the last 4 months, we have been raising the money to pay for Zolgensma, $2.1 million dollars.
This week has been BITTERSWEET for Livie. We were told at the beginning of our journey that there was no option but to travel to receive this life-changing treatment. We recently learned that the HSE has treated two children in Ireland with Zolgensma under a compassionate access programme, where qualifying children around the world are randomly selected to receive the gene therapy. This is incredible news and we are so happy for these children and their families! Unfortunately, we were advised that it was very unlikely that Livie would be selected under this programme.
Since learning this, we approached the HSE and offered to pay the full cost of Zolgensma to them in order to have Livie treated here in Ireland. The HSE have the skills, experience and resources to help Livie BUT HAVE CHOSEN NOT TO DO SO. We have pleaded with the HSE to help us avoid the risk of travel with our very vulnerable child during a global pandemic. Their response was that it is OUR DECISION to travel during this pandemic.…
Can you please help us change their mind and allow Livie to be treated in Ireland to avoid traveling in this pandemic?
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