This matter has been raised twice already this morning, but it is hugely important. I will make a personal appeal to the Taoiseach regarding Skyclarys and the further delay that has now arisen. Yesterday, Emma O'Shea came to Leinster House from west Cork with her mother, father and brother. I am in regular contact with Emma, but seeing her here again yesterday fighting courageously for a medication that could help to slow the progression of this cruel disease had a profound impact on me and my staff. Emma is just 26 years of age and is now confined to a wheelchair. Her family knows all too well the reality of Friedreich's ataxia because Emma's brother died from this disease. Last night when Emma got back to west Cork and learned there would be yet another delay, she sent me a text message. Her words were simple: "It is a joke. I am heartbroken". Every day matters for Emma. Every delay means more deterioration, more uncertainty and more fear. I am not hear to blame the Taoiseach. I am asking the Taoiseach to get personally involved and to put the full weight of his office behind this issue. I hate to be so blunt, but what happened to Emma's brother cannot be allowed to happen to Emma-----

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------because of delays. I urge the Taoiseach to please do everything in his power to get this medication across the line.

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Emma's family and other families like them simply do not have time to wait.

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