Our roommate is supported here in Canada at the DAILY cost of $125.00, 7 days a week, all of her life.

The article you posted (thank you) is about our lawsuit and I would like to add some comments.

Something that is extremely significant that requires comment is that in Canada, the life of a disabled child is worth very little. For that matter, the life of any dead child is worth very little.

The option of finding a lawyer on contingency simply does not exist. In the case of a win, if costs were awarded on the basis of partial indemnity, there could be a significant loss.

All that mattered to us was to obtain effective remedies to ensure that the what happened with our daughter does not happen to another child.

Annie was rushed to the hospital in respiratory distress at the age of 80 days and died within 24 hours. No diagnostic tests were done that determined the cause of the distress. When Annie suffered a “code blue” on the ward, the records reveal that no call was made to the ICU for over an hour.

The data shows stability until one hour before death at which time the records stopped. There is no medication record for the final nursing shift and two lethal quantities of narcotics were removed without a physicians order. No postmortem toxicology occurred.

To this day, we do not know why or how Annie died or was going to die. The surgery that had been described to us as something she would not survive turned out to not have a diagnostic basis. Most children with her genetic condition have serious brain anomalies and heart conditions and die from heart failure or apnea. Annie had none of these.

What we do know is that Annie’s genetic condition defined her. Our government specifically restricts infants with “pre-existing conditions” who suffer apnea from having an at-home apnea monitor.

The hospital website had information that described care for children on the basis of a genetic label as being supportive and palliative. We believe that this is wrong because there is a wide range of manifestations.

We believe that the issue of genetic discrimination in hospital NICUs is one that needs to be addressed. We have spent tens of thousands of dollars and four years of effort on it. Adversary was not our first choice by any means yet we were unable to initiate a comprehensive, open discussion on priority-setting policies, the rights of the disabled child and the absolute absence of any protection for the vulnerable child.

We greatly appreciate the encouragement of many in the United States who supported us or allowed Annie’s story to be known. In particular, we are grateful to the Hastings Center Report.