Timmy Dooley (Clare, Fianna Fail) | Oireachtas source

I raise the issue of a lack of a designated expert in the Health Service Executive, HSE, for those individuals who suffer from Ehlers-Danlos syndromes, EDS. The Minister is aware that this is a group of syndromes relating to connective tissue disorders. The way in which they affect patients varies greatly. For some, the condition can have a profound impact on the quality of life. It has an impact not just on health but in many cases on an individual's mobility. That can range from relatively normal to very severe.

I will raise two cases in Clare with which I am very familiar. The first is Aoife Sage and the other is Zara Cronin. Aoife was diagnosed aged nine and her condition since has deteriorated rapidly from initially having some weakness or fatigue, with episodes of fainting and dizziness, to what is now joint pain and the requirement for a wheelchair. She is now 14. She suffers from instability in the neck and with certain movements her neck becomes dislocated. One can imagine the impact this has had on Aoife, who is unable to attend school. Her condition now is such that home schooling is not even an option for her.

There is no care available for her in the Republic. She has visited London for certain scans and there is some assistance in that regard. However, her condition, bad and all as it is, can be improved, along with her quality of life and mobility, if she can access surgical intervention that fuses parts of the head and spine. I am no medical expert in that regard but I understand her parents have consulted with a private clinic in Barcelona. I am aware that in the case of Zara Cronin the same solution could apply. I am also aware of a number of other cases throughout the country. They are relatively small in number but we understand there could be a significant benefit for those sufferers if they could access the surgery.

The difficulty is the State is not in a position or has not been in a position to provide funding as the available care is not in the public service anywhere in Europe. It is, however, provided for in this clinic in Barcelona. It is pretty clear from what I have seen and read that this intervention would have a very significant impact on the lives of the two girls with whom I am familiar. It is incumbent on us in this House and in the Department not to stand back from intervention because it is exploratory or at an early stage when there are recognised positive benefits for others. I appeal to the Minister to look at the cases again. I know there has been some communication between the Department and these families and others with a view to providing funding at this stage to ensure these children can be treated in the private facility in Barcelona. We can then develop our skill sets so we can try to be in a position to treat other individuals who will present at a later stage. I accept it is not possible to put in place that clinical care and intervention overnight here but it is available elsewhere.

I met the parents of these girls and Aoife's have had to do a crowdfunding exercise. I attended an event in Shannon the other night where the families and friends from the area around Sixmilebridge, Shannon and Newmarket came together in desperation to try to put funds together to help this family. The people on the ground get it and understand the positive impact that this family could experience. Anybody I have spoken with who knows the family, in some cases better and for longer than me, knows this is genuine and this will make a difference if the surgery is successful. It cannot be done without money.

I know we have come through a difficult time in the country but in this day and age should we be seeing a family effectively begging from their neighbours to collect money in order to have a medical service provided to their beautiful daughter? It says much about how we as a society react to children in dire circumstances. In fairness, the Minister while in the Department has demonstrated a great capacity to address serious matters as they arise. I hope he can do the same here and deliver some good news. I hope he will be in a position to meet the parents of these two children who might act as a representative of others suffering the same condition.

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