Timmy Dooley (Clare, Fianna Fail) | Oireachtas source

I welcome the Minister's commitment at least to meet the parents of the two children in question. I will be in contact with his office and we will try to arrange such a meeting in the next week or so. What is clear from the Minister's answer is that the HSE is still of the belief that it has an appropriate plan and model of care to deal with these complex cases. My interaction with the families indicates that is not the case, and I hope this will be brought home to the Minister when he meets the parents. While some of it is exploratory, good work is being done in Barcelona on cranial fusion and fusion within the spine. The Minister should see some examples of this work. The HSE will obviously want to manage this disease in Ireland, but we must be prepared to look elsewhere, as we do with the management of other diseases for which we access care in other countries when specialist training is not available here.

The families are familiar with what can be done and want to stand by their daughters and give them every chance. The State has a duty and an obligation to assist them in this regard. For this reason, rather than getting into a set piece here, I would like to engage with the Minister and his Department to try to find some way of assisting the families. It is not fair, given everything they must do for their children, that these parents should spend valuable time trying to fundraise from a community that is nonetheless prepared to help. Up to €100,000 would be required to cover the various costs associated with a family relocating to Spain for a period. For a community such as County Clare to fundraise for two families is too great a burden. It is incumbent on us to resolve the matter here and to do so, if necessary, by way of a pilot project or programme in order that we will learn and benefit from it and that other children who present in future will have the benefit of the learning these families will, I hope, be in a position to provide.

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