Tom Clonan (Independent) | Oireachtas source

I thank the Minister of State, Deputy Cummins, for coming in. The Minister for Health, Deputy Carroll MacNeill, approached me yesterday to give her personal apologies to the family this matter relates to because she cannot be here due to her schedule. However, I am glad the Minister of State is taking it because we have worked side by side over recent years in the Seanad, and I know he understands where I am coming from with regard to this Commencement matter.

This is the story of Mikey Henry, a 16-year-old boy who lives in Ballina, County Mayo. He has a neurological condition and, unfortunately, he has developed a severe scoliosis of the spine, which is often a secondary consequence of neurological diseases. It has happened to my son. It is an organic, inevitable and predictable consequence of neurological conditions. If we lived in another jurisdiction, he would have had surgical intervention on this twist in his spine. That is normal and routine in other jurisdictions. If we lived in the UK, France or Germany, he would have been treated, but he has not been treated. This is not just the story of Mikey Henry, a 16-year-old. It is the story of all the children on the scoliosis waiting list. It is a predictable, preventable condition that requires surgical intervention, but that does not happen here.

I spoke to other Senators coming in this morning. The sun is shining. I spoke to Senator Murphy of Sinn Féin. He told me it was 17°C in London yesterday. The trees are in blossom and everything is coming back to life, but a 16-year-old is deteriorating at home in Ballina. Because of the extreme curvature of his spine, he now has type 2 respiratory failure.He is on oxygen during the day and has to wear a mask at night. I can tell you what it is to hear your child struggle for breath and struggle to speak. Your voice, and being able to speak, is your most powerful instrument, especially for a disabled citizen, and it is being compromised unnecessarily. He has not been seen at Crumlin for seven months and it is no longer communicating with the family. The family has been told by Crumlin that he is now inoperable. In this country, he has become inoperable. For shame.

This is preventable, avoidable and unnecessary. This is a waste of a young child's life. I have heard so many people talk about the Netflix series "Adolescence". It has become a major talking point, but this is adolescence in Ireland; young boys and girls are left to deteriorate in this manner. The scandal of the children's hospital is not written in the billions of euro it has cost to build it. The scandal of CHI is written on the spines, and the little lungs and hearts, of hundreds of children, such as Mikey Henry and his mother, Penny.

I know the Minister of State will communicate this to the Minister and I have all of the family's contact details. A surgeon who could review Mikey's case will be in Ireland on 31 March. I know from my son's experience that these cases, though complex, can be operated upon. It is within the gift of the State and the Minister to answer this mother's plea for her son. We should not have to do this. For a family, it is like "The Hunger Games". People such as Penny have to come out in public to talk about their son's situation - here we are. Will the Minister of State communicate that to the relevant Ministers? Let us please sort this problem out.