Brendan Griffin (Kerry, Fine Gael) | Oireachtas source

For the record of the House, I wish to pay tribute to Marisa Reidy, a campaigner in County Kerry who has gone public about her situation in terms of Orkambi and her daughter. I pay tribute to her bravery and her persistence in pursuing what everyone feels needs to be done.

On Kalydeco, I wish to read a particular item of correspondence I received from another Kerry family:

A few days short of our daughter's fourth birthday, when she was due to start Kalydeco, we were given the news that she would not be offered the drug on the grounds of cost effectiveness. This was the cause of much heartbreak and many tears in our household. We want to know why Kalydeco cannot be given to two to five year olds at the same agreed price as six years and over.

We know a price for Kalydeco in the six years and over category has been agreed by Vertex and the HSE in 2013. We also know that it only rightly took the bones of a week to agree said price. We would hope and pray that it would be found in the hearts of all involved to resolve this very serious matter as quickly as you did in 2013. Surely the quality of our children's lives deserves the same urgency as the original decision in 2013.

Our daughter's diagnosis was the most heartbreaking day of our lives and one that will never be forgotten, but the beautiful staff of the Butterfly unit in University Hospital Limerick helped us cope and taught us to have our cry, get it out of the way, and promised us only positivity after that. We have lived successfully under this very wise philosophy for four years until we had our hearts and the hearts of every doctor, consultant, nurse, parent and sufferer of CF broken by this mind-blowing decision. We had a carrot dangled in front of us - the closest thing to a cure there is for our beautiful child - and with no warning it was snatched away from us and so has remained gone.

Is there anything you can do to help us in our quest to get this drug available to improve our daugher's life?

I think that says it all.

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