Ciarán Kilmurray, with a still from the video that his schoolmates at St Kenny NS made for him.

Westmeath school makes video for student who is being denied life changing CF drug

The students of St Kenny NS have made a video for a classmate who is being denied a life changing drug to treat his cystic fibrosis.

Seven year old Ciarán Kilmurray should be busy enjoying the lead up to Christmas with the rest of his friends in first class, but instead is being treated for his CF at Crumlin Children's Hospital. It is hoped that he will make it home for Christmas day.

He is one of 35 children across Ireland currently being denied access to the ground breaking drug, Kaftrio, due to a pricing dispute between the HSE and Vertex, the pharma company that produces it.

Ciarán and his mother Stephanie recently spoke on the Joe Duffy Show about the positive impact that Kaftrio, a drug that is already available in Ireland to eligible adults and other children, would have on his life.

Eager to let Ciarán know that they are thinking about him and to raise awareness of the predicament that he and 34 other children aged between six and 11 find themselves in, the students of St Kenny made a heart-warming video.

Speaking to the Westmeath Examiner, St Kenny NS principal Clare Egan said that Ciarán, who is a talented sportsman and a proud member of St Loman's GFC, is a much loved member of the school community and has shown admirable resilience over the past few years.

“When he started school it was at the height of the pandemic. For much of junior infants he was taught on Zoom as it was too dangerous to come in with his classmates. He would come in for the last hour of the school day after his class had gone home and his classroom had been completely sanitised and his teacher would teach him by himself.

“In senior infants he had to be isolated and had to have a screen around him. Then gradually as the situation changed and the Covid threat receded, he was allowed to sit at the same table as his friends.

“He's now in first class and has been is school as much as possible, but if we have a sickness in class, such as if a child has Strep A, he has to be sent home immediately.

“He loves school and is a lovely child and is very intelligent. We just wanted to do something to say hello to him while he is in hospital and then thought that we'd do a bit more to highlight his situation and the fact that there are 34 other children in the same predicament.

“He has been deem eligible for the drug, but it's all down to money. We want to try and get the video out there to put pressure on the decision makers, which is the government and the HSE.

“We understand that it's very expensive, but we have the money in this country. We have the money for lots of projects, but we don't seem to have the money to improve these children's lives.

“His family are hopeful that he will make it home for Christmas day. He is in all our thoughts. He is a very special boy and the other children adore him,” Ms Egan said.