Pat Breen (Clare, Fine Gael)

In Clare there are 21 children registered with muscular dystrophy. In the few minutes available to me let me tell the story of my cousin and her four children. Their two boys had muscular dystrophy and the two girls have it as well.

The two boys are now dead, but let me tell of their lifestyle. They died at the age of 20. Between the ages of four and five they were diagnosed with muscular dystrophy. They were diagnosed when they started walking on their toes because they could not put their heels on the ground. They never learned to ride a tricycle like other children or have a normal life, and they fell very easily.

I knew the two children well. At the age of eight, they became wheelchair bound. The family had to provide electric wheelchairs because this gave them mobility and, most important, independence. At the age of 14, both children had operations for curvature of the spine. This operation lifts the spine off the lungs and gives the children more breathing capacity. They were under constant care.

Parents have a tough job with children with muscular dystrophy. They act as carers, nurses and physiotherapists because physiotherapy must be provided on a daily basis. They become dietitians because the children's diets must be watched carefully. They also act as teachers.

Both of these boys coped well at school and were treated very inclusively. Both had got to university before they died. As they got older, their mother told me, they learned more about their disorder from the Internet. Of course, it gets harder because such children know they do not have long to live. At night time they need constant monitoring because they cannot move in bed and the parents must be awake at night to move them at regular times, otherwise they get bed sores. They are also prone to chest infections, and to heart difficulties and pneumonia. This is a very serious problem affecting families and my heart goes out to the families with children affected with muscular dystrophy.

As I stated, in the case of my cousin's family, the two boys died. The two girls are carriers but they lead healthy lives. Once when on holiday abroad with his parents one of the boys got mucous in his throat and almost choked. There was an advanced paramedic in place and the lad recovered. He was just 19 or 20 years old. However, one of things he said to his mother was that if that happened again, he did not want to go on.

This is just one story but it is the story of many other parents, some of whom are in the Gallery. I urge the Government to adopt international standards in this area. We must be part of international research as we do not have independent capacity in this matter.

See this speech in context