Ms Orlaith Staunton:

I will tell the committee a little about Rory. He was a very healthy child. We are not talking about a situation where a child was immunocompromised or anything else. He was very healthy. He was 5 ft 9 in. tall, with big shoulders. He was a big kid.

What happened was that when he was playing basketball one day he fell and cut himself, resulting in a very slight scrape on his arm. Overnight he spiked a fever. We brought him to his doctor who said it was a gastric flu, but because he needed some fluids she sent him to one of the top hospitals in New York. We took him to the emergency department there, where staff concurred with her that it was a gastric flu. We brought him home but his symptoms worsened. We contacted the doctor - this is a familiar story for everyone here - and she said that it was still a flu and not to worry about it. That was on Friday. He fell on Wednesday. We brought him to the hospital on Friday night and he died in the ICU on Sunday evening. When we were told that Rory had died from sepsis, we had never heard the word. It was even more devastating for us when we found out that if his condition had been accurately diagnosed as sepsis when we first sought medical attention for him with his doctor or with the hospital, he would be alive today.

Since Rory's death, we have heard so many different versions of this story repeated again and again, specifically in Ireland with Lil Red and others. It is always parents or loved ones who have never heard of sepsis. Their loved ones' symptoms were missed and their concerns dismissed by healthcare providers. Rory spoke loud and clear when he was ill. He said, "I have a pain here and here. I don't feel well". Nobody listened to him. No matter how much I or his dad tried to get them to listen, they would not listen. I think that is the same the world over. It is not specific to New York. When Rory died, we thought this was just completely wrong. I never thought there was anything that could kill my child so fast that I did not even know the name of.

We then discovered that sepsis affects 1.7 million Americans every year, of whom a huge portion, 350,000, die. When Rory died, we embarked on a campaign to end these preventable deaths. In New York state, we started working with the department of health and hospitals there because we believe it has to be a coalition of hospitals, government or state officials and patient advocates. We worked with them and in 2013 they instituted Rory's regulations, which are a series of measures and protocols for the recognition and treatment of sepsis. Accompanying those regulations was a parents' bill of rights. The one thing I felt was that nobody heard me or listened to me. Before a child can be discharged from the emergency room in New York state, it has to be explained why that diagnosis of the child, or any other diagnosis that may have been considered, has been come to. At least that opens us all to understanding that there might be something lurking that we do not know about. In 2016, Rory Staunton's law was passed in the state. That is essentially about professionals working in healthcare, everyone from dentists to healthcare workers to doctors and nurses, having to complete sepsis coursework specifically in sepsis prevention.

We have met many of the people in New York whose lives we have saved. There is a huge number of them. Some 20,000 have been saved in four years. We also reduced paediatric sepsis deaths by 40% in those four years. We would like to see sepsis regulations expanded around the world. We would like to see all children have the same right to life. We do not think that the level of care that anybody receives should be different. If we can get regulations in place, no one needs to die from sepsis because it is a preventable death.