Colm Burke (Fine Gael)

My information is that one in 18,000 babies born is affected by this disease. At present, 88 patients are attending the two specialist EB clinics in Our Lady's Children's Hospital in Crumlin and St. James's Hospital. The number of people affected is extremely small. All I ask is that EB be classified as a long-term illness. There is no cure for the disease; it is there for life. Serious consideration should be given to including EB in the long-term illness programme.

I was given the example of a family in Swords who have two girls, aged three and eight, and who have had to surmount all the obstacles I listed to get medical cards and to put support systems in place. It is quite difficult for parents to deal with that. First, they must deal with the knowledge that their children have a long-term illness that will not go away. Second, they must deal with the condition day to day.

I ask the Minister of State to consider what I ask. It is not a huge demand. The number of people affected is small. The one in 18,000 figure translates as approximately five babies being born with the condition every year in Ireland. We should give serious consideration to this matter and I ask that this be done.