There is an online petition to get Livie treated in Ireland
Baby Livie's family are at a loss to understand why they must bring her to the US for treatment when the same gene therapy has previously been administered in Ireland.
The Mulhern family are celebrating reaching the €2m target needed to get her lifesaving treatment in the US.
But it is a bittersweet time for the family who last week marked Livie’s first birthday.
As has been well documented, Livie suffers from spinal muscular atrophy (SMA) type 1. Her best chance at survival is Zolgensma, for which Livie must travel to America.
Since discovering that the HSE had previously administered Zolgensma, the family have been pleading for Livie to be treated in Ireland. It would mean that this sick, vulnerable baby would be able to avoid travelling to the US in the midst of a global pandemic. But it seems their pleas are falling on deaf ears. Livie's grandfather Martin Mulhern told the Donegal Post: “We wish to pay tribute to everyone who has helped to get us this far, to the young musicians playing on the Diamond at 'Busking For Livie' and everyone who has been involved in any way from the beginning.
“We are very grateful to everyone who has got behind Livie.
“We are now trying desperately to have Livie's treatment done here by the HSE in Dublin but we seem to be coming up against a brick wall.
“We know that the treatment has been given to two children in Dublin. In this period of Covid to travel to another country to get a treatment that has been done here seems inexplicable.
“We have the money raised and we are willing to cover the cost of Zolgensma.”
The Mulhern family are appealing to anyone who can help Livie to be treated in Ireland to do what they can.
There is an online petition on change.org called 'Convince the HSE to treat Livie in Ireland' and people are encouraged to sign it.
In the meantime, the gofundme page A Better Life For Livie remains open. Even though the treatment target has been reached, Livie and her parents will need to spend three months in the US while she is being treated so any further funds will help with that.
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