In a whirlwind week for baby Olivia Mulhern, her team of supporters are on her side again in a battle with the HSE to ensure she gets treatment at home.
Olivia ‘Livie’ Mulhern’s first birthday on Wednesday was marked with major celebrations.
The special Meath baby, who’s father Keith is from Donegal, was at the heart of a fundraiser to source €2million for a ground-breaking therapy for her spinal muscular atrophy (SMA) type 1.
Now that the funds are available, Livie’s family are hoping that they can get the treatment she needs in Ireland through the HSE and avoid travel.
Livie was diagnosed with the rare and serious genetic neuromuscular condition in April. Since then, communities across Ireland have rallied around her and her parents to raise enough money for a life-saving treatment.
The gene therapy called Zolgensma is available in the US, but this week, Livie’s parents Keith and Karen learned that the HSE has treated two children in Ireland with Zolgensma under a compassionate access programme. They discovered that qualifying children around the world are randomly selected to receive the gene therapy, but it was unlikely that Livie would be selected.
Keith and Karen said they approached the HSE and offered to pay for the treatment, but they were devastated to be turned down.
“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,” the family said.
Livie’s supporters have launched a new petition on change.org to call on the HSE to allow Livie to receive Zolgensma in Ireland. So far, more than 3,000 people have signed the online petition in a bid to save the family from having to travel during the pandemic.
Meanwhile, the Mulherns are continuing to plan to travel to the US for Livie’s treatment soon, as Zolgensma is used to treat SMA types in children up to the age of two.
Over €2,2million has now been raised for little Livie, including a €1million donation from another family fund, and all extra donations are being used to cover Livie’s medical costs and hospital bills for the treatment and on-going care, equipment and accessibility needs.Tags: