"It all boils down to money, there is a row going on between the HSE and Vertex, the company in Boston, USA, that manufactures the drug over the cost of it.”
Gráinne Uí Lúing, from Maynooth, in County Kildare, is mum to Caoimhe, (8) and Fiadh (6), who both have the debilitating disease and were part of a group of 35 children excluded from getting a drug called Kaftrio last May when 135 other children were permitted to have it.
Gráinne told the Sunday World: "It all boils down to money, there is a row going on between the HSE and Vertex, the company in Boston, USA, that manufactures the drug over the cost of it.
"In May, the HSE made the decision that 35 children between the ages of six and 11 who have a rare form of CF should be left off the list of those allowed get Kaftrio, yet any child of 12 and upwards can get it.
"It may have been a simple administrative error where those with the rare genotype our girls have were accidentally excluded but if that is the case the HSE are in no rush to fix it.
"I walk into my local pharmacy and can actually see Kaftrio on the shelf and can't have it, that is torture, absolute torture.
"I come out of that shop with two bags full of medication, nebuliser's, inhalers everything that my girls need when really I should be walking out with a box of tablets that would help them enormously."
Gráinne revealed that she has written to health minister Stephen Donnelly but feels she has been fobbed off with the reply.
"He said that as talks between the HSE and Vertex are at a sensitive stage he doesn't want to get involved.
"How sensitive are they when the two companies haven't met since the fourth of July?! They don't exactly seem to be in a rush to resolve it.
"CF is a disease that sees patients deteriorate every day without proper medication so even if we were given Kraftio today, we are starting four months behind everyone else.
"When that decision was made in May it was as if the HSE were playing God and decising who should be give the better chance of a longer life and now both Vertex and the HSE are doing the same over money.
"Vertex are saying you can have the drug but you have to pay for it while the HSE are insisting they paid and in bulk for it that it should have been given enough to cover everybody and they are not forking out any more.
"In the meantime my daughters and 33 other children have to suffer the consequences and I mean, literally suffer.
"If we had this drug they would have so much stronger immune systems and have a better chance of a longer life but nobody seems to care about that."