A Donegal family may be forced to move to Britain to seek treatment for their seriously ill daughter.
Maeve McGill, 15, has a rare condition that means she needs €437,000 worth of drugs a year but the Health Service Executive (HSE) in Ireland is refusing to pay for it.
Her family are calling on the Irish Government to address the issue – or they will be forced to emigrate to ensure she receives the treatment she needs via the NHS.
The schoolgirl from Ardara is one of just six sufferers of PNH in Ireland and the youngest.
The life-threatening condition, known as Paroxysmal Nocturnal Haemoglobinuria, causes the destruction of blood cells leading to side effects such as anaemia and kidney failure.
Without the vital drug Soliris, a medication which controls the breakdown of red blood cells, a third of PNH patients die within five years.
Because of the severity of the condition, the McGill family are looking at selling the family farm to move to Britain, where the drug is more readily available.
But they say the move would be devastating for the family who have farmed the land in Donegal for generations.
“My family have farmed here in Ardara for generations going back to the 1800s,” said dad Pat McGill. “I feel it is unfair on the whole family, not only affecting our youngest daughter Maeve, but Teresa and me and our other children.”
Maeve’s godfather, Harry Walsh told The Irish Post: “They are still hoping against hope that the Irish Government will relent.”
After contacting their local TDs, the family had their case heard in the Dáil by Deputy Pearse Doherty of Sinn Féin.
In response, the HSE issued a statement saying that while it is “very empathetic towards those affected”, the drug is not approved for reimbursement in the Republic.
The statement went on to say that the organisation is in ongoing negotiations with the manufacturer to reduce the cost of the medicine in Ireland.
