Dr. Rosemarie Watson:

The mothers do the immediate caring and the fathers do all the bureaucracy. Sometimes in a family, they both help. In fact, it has become a problem for one of our patients. The father was doing the dressings but when the girl reached puberty, he had to back off and the mother was left just by herself, so that was an issue.

Debra is paying for nurse hours to the tune of €82,000 a year. That is because when the child turns 18, he or she goes from the public health nurses to the disability services. They have found that the disability services do not have the resources to fund these nurses, or that is what we have been told. Ms Callis may know more.