Matt Carthy (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I join with everybody in welcoming the children in the Public Gallery along with their parents and siblings. To state the obvious, they should not have had to come to the Dáil this evening.

I especially want to welcome a gorgeous little girl from my own county, Aoibh Rooney, along with her parents Eavan and Philly. Aoibh was born with arthrogryposis. I am pronouncing that completely wrong, but it is a horrible and painful condition. Eve's joints tighten and if they are left untreated, they dislocate and twist so that everyday tasks become a painful ordeal.

The scoliosis crisis has become so desperate that children with Aoibh's condition have, it appears to her parents, been ignored entirely. Aoibh is not a faceless child, and neither are the hundreds of other children who have been abandoned and neglected, including those on surgical waiting lists and endless outpatient lists. Many children are becoming inoperable while waiting on these lists. Her family have even travelled to the United States and England. She was in Poland last week where, I am told, there were at least four other Irish families at the same clinic.

Aoibh's family want me to record that they have no confidence in CHI management to address her needs. They tell me they feel that the neglect of children with disabilities in Ireland has been normalised by CHI executive management. There was a plan in place for Aoibh. She was making progress and her parents had hope. Aoibh's surgeon is now on leave, however, as is well known. Therefore, it is the job of the Minister of State and the Government to find a solution for Aoibh and other children. It is the Government's job to ensure no child is living with pain and no child suffers lifelong damage because of the failures of bureaucrats, officials or incompetent politicians. The Government's amendment suggest that it continues to fail at its job. I ask and appeal to the Minister of State again to do the honourable thing by withdrawing the Government amendment and backing Deputy Cullinane's motion, which has the support of these families that have been affected and treated so badly for far too long.

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