CF children attend Laois vigil for Orkambi

Laois families hold candlit vigil to plead for the Cystic Fibrosis drug Orkambi

CF children attend Laois vigil for Orkambi
By Lynda Kiernan lynda.kiernan@leinsterexpress.ie@laoisnews

Two young Laois girls who have Cystic Fibrosis were among those at a candelit vigil in Portlaoise last Friday, to plead for the lifesaving drug Orkambi to be bought by the government.

Eleven year old Niamh Doyle from Timahoe and young Lisa McEvoy from Portlaoise were supported by their families and friends, outside the offices of Laois County Council.

About 30 people lit candles and spoke and read poems, with one lady travelling from Clonmel to try and secure the drug for her 2.5 year old child.

Niamh is a fifth class student at Timahoe NS, and a keen gymnast at Portlaoise Gymnastics Club, Niamh has been fairly well so far.

“I want to get Orkambi before I have to get a lung transplant. It’s an extra thing that could keep a lot of people alive,” she told the Leinster Express.

“When I am not well I’m not able to go to gymnastics because i feel really tired and sick. I hope the Minister buys Orkambi so i will have a better quality of life, and do more gymnastics because they are getting new equipment,” she said.

Niamh’s mother Adrienne said they were “in a bubble” up to recently because her daughter was coping so well.

“Only when she got sick before Christmas, and had to go into the CF ward St Michael’s in Crumlin, did I really get a fright. The other children that were a bit older than Niamh were really sick, some on food tubes, it was hugely upsetting. Then I realised the extent of the battle that other families were fighting to get Orkambi. CF can get worse during puberty, and every lung infection does increased damage, so we are trying to maintain what she has,” she said.

Niamh will be medically ideal for Orkambi once she turns 12 in five weeks, but so far price negotiations between the government and Vertex, the American drug maker, are unsuccessful.

“They are putting money before life, it’s nearly a year down the line that they are assessing costs. Niamh’s two week stay in hospital cost €12,000, it was paid by our health insurance, but typical hospital stays for CF can be up to six months. How much is all that costing?” she said.

Simultaneous candlit vigils to plead for Orkambi were held in almost every county in Ireland.

“We remembered those who probably would be with us if we had the drug, and supported those who still are fighting Cystic Fibrosis,” said Adrienne.

Earlier this month, Laois' 19 councillors unanimously agreed to request the government to buy Orkambi.

A decision is expected later this month.