Gerald Nash (Louth, Labour) | Oireachtas source

I thank the Minister of State for being in the Chamber to respond to this issue.

Alice Turner, Drogheda; Clodagh Daly, County Laois; Robin Smith, Dublin; Merryn Lacy, Bray; and Donal Parsons, Sligo, are infants affected by neuroblastoma. The first time most Irish people heard about this dreadful illness was when Lily-Mae Morrison, the "tiny dancer" from Galway, and her family captured their hearts last year and the year before when raising awareness of the condition and funds for her treatment in the USA. She is doing well. Thanks to the tenacity and determination of her family, friends and supporters across the country, she received the kind of treatment that at least six but possibly ten or 11 Irish children with the same condition need. The families affected by this often extremely aggressive childhood cancer are very grateful for the expert care they have received from, and the commitment shown by, medical staff here. The treatment and support provided are excellent.

A seriously sick child is every family's worst nightmare. Our hearts sink when we hear about a child diagnosed with any life-threatening condition. A diagnosis of neuroblastoma presents a whole new set of challenges for the family affected. It is the natural order for parents to do anything in their power to give their children a shot at life. In the case of neuroblastoma, this can mean having to raise up to $200,000 to meet the cost of getting onto a treatment programme in the United States that has a proven success rate and minimises the often catastrophic risk of relapse. Relapse rates are extremely high; they can be 70% to 80% in cases where the aggressive form of the condition is present. There are strong reports from the United States on the efficacy of this programme and treatment.

I do not have the answers to all of these challenges for families living with this waking nightmare. I do not expect the Minister of State to have the answers, but I appeal to him to find a better, more humane and supportive way for the State to assist these families in spending as much of the precious time they have available with their families, not going from cake sale to coffee morning, from fund-raising gig to table quiz, to ensure their children get the chance every child deserves.

See this speech in context