Little Livie Mulhern has been given the green light to get her treatment in Ireland.
Family and friends of the toddler had raised more than €2million to get Livie vital treatment for her spinal muscular atrophy (SMA).
However, they were told recently that despite having the funds they could not get the operation in Ireland but had to travel to the US.
Today her parents Keith, who is from Donegal, and Karen have revealed that the Children’s Health Ireland group has now changed their mind and Livie will have her operation in October.
Her parents revealed “Children’s Health Ireland reached out to us a couple of days after we passed the fundraising target to advise they were open to facilitating Livie’s treatment here in Ireland. We have been busy in the background since then.
“We now have confirmation by telephone that CHI will allow us to use the raised funds to have Livie treated here in Ireland and they have scheduled the treatment for 14/15 October.”
They are absolutely delighted that LIvie will not have to travel to the US during the current Covid restrictions.
“We are absolutely delighted that Livie will not have to travel to the US or elsewhere for the treatment. We are very keen to do everything possible to ensure nothing delays the treatment at this stage as little Livie’s condition remains progressive.
“We are so grateful to everyone at CHI who has worked so hard on putting this together. Everyone involved has moved mountains to give little Livie the very best chance at life.”
However, Livie’s battle is far from over including plans to continue fundraising for the treatment.
“Unfortunately, we have been advised that the price of Zolgensma will be higher than if we travelled to the US as VAT is chargeable at 21% in Ireland. CHI has asked that we keep the fundraising open to ensure that sufficient funds are available to pay the VAT.
“We have all come too far together to let a little bump like this stop us now. Thank you all so much for making this possible. We are just so happy,” they added.