Mr. Declan McPhillips:

I am sorry. Some 34% of the families are living in south Dublin, Kildare, Wicklow and the midlands, 20% are living in north Dublin, Cavan, Monaghan, Louth and Meath, 17% are living in the south, 14% are living in the west and 14% are living in Northern Ireland. Some 55% of girls with Rett syndrome are under the age of 12 years. The oldest woman with the condition who I know of in Ireland is 46 years of age and lives in Longford. I met her at the conference last October. Some 66% of the women in question have or had scoliosis. The waiting time for surgery has ranged between four months and three years. Some of the women have curvatures of 85% and some 89% and 71% suffer from severe constipation and reflux, respectively.

Some 59% of parents get less than three to five hours' sleep on a normal night. Some 63% have received injuries relating to the care of their daughters and 87% have reported that family income for their daughters' care has been reduced by the previous two budgets. Some 66% of families are the affected children's primary carers, but only 54% receive respite care and 17% of the girls do not receive any physiotherapy at all. As 83% of them have medical cards, it means that 17% of girls with this condition have none.

Of the parents, 94% report stress in their relationships because of caring for their children and 61% have experienced depression over their daughters' disabilities. Some 47% report difficulties in waiting for surgeries. Long waiting lists are the most usual problems. In Northern Ireland, the longest that most families must wait for appointments is eight weeks.

Other items referred to by families include inadequate access to medical services, medical service staff not being knowledgeable of Rett syndrome, difficulty in accessing the necessary equipment, cutbacks to transport and being unable to afford alterations to cars.

As a parent, I know what it is like...