A short story of a family affected by cystic fibrosis and their struggle with the prospect of a child with the genetic disease. Poignant and thought-provoking, this story deals with the legal and ethical aspects of fetal genetic testing from the parents’ perspective.

The following poem is from a collection of 41 written by me to try describing Huntington’s Disease (HD).

This poem tries to convey how people “at risk” of developing the disease have different approaches to coping with not knowing. Some need to know their fate whilst others cannot face up to testing for the gene even though there is just as much chance they might be negative.

Here I also touch on diagnosis by proxy. In essence… If one sibling tests positive he/she confirms their parent is also HD positive and the others are confirmed at risk whether they wanted to know or not!