Paul Murphy (Dublin South West, Solidarity)

I might just quote from Elizabeth who was in touch with me to let the Minister of State hear her voice.

... I would like you to explain to [the Minister] Leo's everyday struggles (he has autism a heart murmur, a learning disability, and muscle weakness) these are all due to his ocnds [Okur-Chung neurodevelopmental syndrome] diagnosis I would like you to explain that though deteriorating isn't a noted symptom this is likely due to the lack of research on the small numbers of 300 people worldwide! That I've spoken to other mothers and they are noticing the same deteriorating! One of those mothers is also from Ireland and her son is now in a wheelchair. That we need research on this condition to know what the future holds for our son, having no answers as parents is hard enough without having no answers to give him! We can't tell him if his legs will just keep getting more tired and less able to support him. (This week he has started to fall like his legs have just started going from under him)

Obviously, the Government has announced increased funding for rare disease initiatives, which is welcome. However, on the basis of the current funding the Government talks about nine rare diseases which are being screened for. Obviously, that is a drop in the ocean when we consider the over 8,000 rare diseases affecting 300,000 people in this country. Therefore, we need more funding for research, which is not going to come from the private sector. Research will enable people to be less isolated in their own condition and enable them to see some light at the end of the tunnel to say, "Okay, this is what is likely to happen and this is the treatment and management that can be used to assist me."

I appeal to the Minister of State, in the context of the budget discussions and so on, to ensure that the most possible is provided.

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