Mum in "total shock" over deal on CF drugs

“I just thought - I'm actually never going to have to go to the Dáil again - then I looked down at Finn and I just started bawling,” the mother of a three year old boy living with cystic fibrosis describes her reaction to the announcement that the HSE had reached an agreement with a pharmaceutical company to provide a possibly life altering drug.

Last week Minister for Health, Simon Harris, told the Dáil that an agreement had been reached between the HSE and Vertex to allow for the supply of Orkambi and Kalydeco to Cystic Fibrosis patients from May 1. The HSE and Vertex will now continue to work to complete the approval process and contractual agreements.

“It's fantastic news, we just cant believe it, we are in total shock,” campaigner Linda Whitmarsh told the Celt. The Shercock mother has been leading the charge locally on behalf of her son, Finn. It is now expected Finn will begin treatment using Orkambi when he turns six years old.

Linda says that the decision has transformed her family: “When you have a child with a long term illness you always have to have hope. You hope that something is going to come down the line for them. But there is an overwhelming fear that there is an expiration date on him because of cystic fibrosis.”

“I won't miss the campaigning, but I would do it again in a heartbeat. I can just get back to being a normal Mammy now,” Linda concluded.