John Curran (Dublin Mid West, Fianna Fail) | Oireachtas source

Yesterday, I went to visit a family in my constituency where I met a boy by the name of Sam. Sam is eight years of age and suffers from spinal muscular atrophy, which is a degenerative neuromuscular condition.

Sam is in a powered wheelchair. His mother explained that he is PEG-fed - that stands for percutaneous endoscopic gastrostomy - and does not eat or drink orally. Extensive physiotherapy on his chest and on all his limbs to keep him supple and free from pain are part of his everyday routine. He has endured so much in his short life. He has had long hospital stays, sometimes for weeks and months at a time, largely because of chest infections.

Sam's mother went on to say, however, that his condition is not without hope and that there is a drug that is available in up to 20 countries around Europe but not in Ireland. That drug is Spinraza. I understand there are 20 families and 25 children in this country suffering with SMA from whom this drug would be deemed to have a positive effect.

SMA is a degenerative condition and timely intervention is very important. While I understand that the Government is looking at making this available, I am concerned that the period of consultation is taking a long time. It is young children who are involved. I appeal to the Taoiseach not to hide behind bureaucracy and procedure. I appeal to the Minister of Health to engage actively with these families.

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