Ciaran Staunton said his son’s ambition was to “save the world” but 12-year-old Rory never got around to it.
In March 2012, Rory, of New York City, cut his arm while diving for a ball at a basketball game. Later that night he woke up with severe pain in his leg. By morning, he had a fever of 104 degrees.
Four days later, the boy died of sepsis, a lethal overreaction of the immune system to an infection that causes the body to attack healthy tissues and organs.
Now Rory’s parents, Ciaran and Orlaith Staunton, are calling for hospitals to do more to prevent other families having to endure the same tragedy, including adopting a sepsis protocol and providing greater education about the deadly disease.
Rory Staunton, pictured, was just 12 when he died of sepsis in 2012. His parents are now introducing the first national legislation on sepsis.
The Stauntons are working with lawmakers on the first nationwide legislation in the United States to detect sepsis earlier so that “no one else has to go through” this devastating disease that kills more Americans than stroke, Alzheimer’s disease and diabetes.
Introducing the bill last week, dubbed the Securing Enhanced Programs, Systems and Initiatives for Sepsis (SEPSIS) Act, Senate Majority Leader Chuck Schumer said, “Sepsis is a devastating medical condition that unjustly claims the lives of hundreds of thousands of Americans each year.
“The real tragedy is that many of these deaths are preventable if detected early. The federal government must continue to promote awareness and research to combat this devastating disease and save lives.”
Mr Staunton added: “This is the first major federal response to sepsis.”
What makes sepsis dangerous is that it often begins with seemingly benign symptoms: fever, fatigue and shortness of breath.
But sepsis, which It can only be prevented if the signs of infection are treated immediately. It can quickly spiral out of control, leading patients to suffer multi-organ failure, heart attacks and amputations as limbs turn black due to tissue death.
Antibiotics are essential to clear the infection, as are vasopressor medications, which help divert blood supply to vital organs.
Mr Staunton told DailyMail.com: “Sepsis is very easy to spot if you look for it. So if you rule it out, you rule it out or you save a life.”
“It would have saved Rory’s life,” Mrs Staunton added.
The Stauntons said awareness is key to preventing sepsis in the first place. Until Rory’s death, they had never heard of the disease.
And they are not alone. The Sepsis Alliance estimates that one in three Americans has never heard of sepsis, even though the disease kills someone in the United States every 90 seconds.
While sepsis affects 1.7 million Americans (comparable to the 1.9 million diagnosed with cancer), one in four U.S. hospitals has no sepsis program at all, according to CDC data from 2023.
And sepsis is on the rise. When Rory died in 2012, there were 270,000 sepsis deaths a year in the United States. That number has risen to 350,000 a year, or one person every 90 seconds.
Only cancer and heart disease kill more in the United States, with 600,000 and 700,000 deaths, respectively.
The chart above shows the annual death toll from sepsis. The only diseases that kill more Americans each year are cancer and heart disease.
Under the SEPSIS Act, all US hospitals would be required to have a sepsis protocol.
These often include screening patients for signs of sepsis as soon as they enter the doctor’s office or an emergency room, performing blood tests to look for infections, and quickly administering antibiotics if necessary.
Hospitals will also have to report data on pediatric sepsis, which affects 75,000 children a year, one in 10 of whom die after being admitted to the hospital, according to the Sepsis Alliance.
Ms Staunton said: ‘Very little has been done on paediatric sepsis.
“We know that 7,000 children die each year from sepsis, but no data has been collected. The federal government has not responded to the levels of death and sepsis in children.
“Therefore, (the government) will be responsible for collecting data for that.”
Mr Staunton added: “We are confident that hospitals will respond to this.”
The new national legislation is based on the Rory Rules, named after Rory Staunton. They require all New York hospitals to have a sepsis protocol.
“The torture we’ve lived with for the last 12 years is not going to be made worse,” Rory’s father Ciaran Staunton told DailyMail.com.
The new legislation mirrors the Rory Regulations, a law passed in the family’s home state of New York in 2013 that requires all hospitals in the state to have a sepsis protocol and report metrics to the state.
The law was championed by the Staunton family and was named after Rory.
Elementary and secondary schools in the state teach a sepsis curriculum, and medical professionals seeking to renew their licenses must take a course on the topic.
Staunton estimates the law has saved 20,000 lives in New York since 2014.
He told this website: ‘We sat down with Senator Schumer’s office and others last year, and it was decided that a federal sepsis bill was needed to ensure that children and adults from coast to coast were protected from sepsis.
“It’s the same treatment you get in a hospital in Massachusetts or California when you come in with symptoms of a stroke or a heart attack or whatever. So why should it be a matter of luck if you come into the hospital with sepsis?”
In the years since Rory’s death, the Stauntons, who also have a younger daughter, have channeled their grief into establishing Putting an end to sepsisa nonprofit organization focused on ending sepsis deaths in children and adults worldwide.
The goal, they said, is to prevent other families from suffering a loss like theirs and to make sure anyone with sepsis can get treatment quickly. Health officials urge patients to get proper treatment within an hour, dubbed the “golden hour,” since after that time organs can begin to fail.
“There’s nothing that can make the torture we’ve been through for the past 12 years worse,” Staunton said.
“Rory came with me on a Tuesday night and I picked out a pizza for him. The following Tuesday, we had to pick out a coffin for him. That’s what we want to prevent from happening in the United States.”