New York boy, 12, dies from ‘silent killer’ that affects as many people as cancer, prompting first-of-its-kind bill

Ciaran Staunton said his son’s ambition was to ‘save the world’, but 12-year-old Rory never managed to do that.

In March 2012, Rory, from New York City, cut his arm while diving for a ball during a basketball game. Later that night, he woke up with severe pain in his leg. The next morning, he had a fever of 104 degrees.

Four days later, the boy died of sepsis, a deadly overreaction of the immune system to an infection in which the body attacks healthy tissues and organs.

Now Rory’s parents, Ciaran and Orlaith Staunton, are calling on hospitals to do more to prevent other families from suffering the same tragedy. This includes introducing a sepsis protocol and providing more education about the deadly condition.

Rory Staunton, pictured here, was just 12 years old when he died from sepsis in 2012. His parents are now introducing the first ever national sepsis legislation

The Stauntons are working with lawmakers to create the first federal legislation in the U.S. to recognize sepsis earlier, so that “no one else” has to endure this devastating disease, which kills more Americans than stroke, Alzheimer’s and diabetes.

When Senate Majority Leader Chuck Schumer introduced the SEPSIS (Securing Enhanced Programs, Systems and Initiatives for Sepsis) bill last week, he said, “Sepsis is a devastating medical condition that wrongfully claims the lives of hundreds of thousands of Americans each year.

“The real tragedy is that many of these deaths could have been prevented if they were detected early enough. The federal government must continue to raise awareness and research to combat this devastating situation and save lives.”

Mr Staunton added: “This is the first major federal response to sepsis.”

What makes sepsis dangerous is that it often starts with seemingly harmless symptoms: fever, fatigue and shortness of breath.

But sepsis, what can only be prevented by promptly treating the signs of infection. can quickly spiral out of control, leaving patients with multi-organ failure, heart attacks and amputations as limbs turn black with dying tissue.

Antibiotics are essential to fight infection, as are vasopressor medications, which promote blood flow to vital organs.

Mr Staunton told DailyMail.com: ‘Sepsis is very easy to find 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,” added Mrs Staunton.

The Stauntons noted that raising awareness is key to preventing sepsis in the first place. Until Rory’s death, they had never heard of the condition.

And they’re not alone. Sepsis Alliance estimates that one in three Americans has never heard of sepsis, despite the fact that it kills someone every 90 seconds in the U.S.

While sepsis affects 1.7 million Americans — comparable to the 1.9 million people diagnosed with cancer — one in four U.S. hospitals has no sepsis program at all, according to CDC Data 2023.

And sepsis is on the rise. When Rory died in 2012, there were 270,000 sepsis deaths per year in the U.S. That number has now risen to 350,000 per year, or one person every 90 seconds.

Only cancer and heart disease cause more deaths in the US, with 600,000 and 700,000 deaths respectively.

The graph 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, every hospital in the US must have a sepsis protocol.

Often, when a patient arrives at a doctor’s office or emergency room, they are screened for signs of sepsis. They also have blood tests to look for infection, and antibiotics are administered immediately if necessary.

Hospitals must also report data on pediatric sepsis, which affects 75,000 children each year, according to the Sepsis Alliance. One in ten of these children die after being admitted to the hospital.

Ms Staunton said: ‘Very little has been done about paediatric sepsis.

“We know that 7,000 children die from sepsis every year, but there’s no data collected. There’s been no response from the federal government to the number of deaths and sepsis in children.

So [the government] will be charged with collecting data for this purpose.’

Mr Staunton added: ‘We are confident that hospitals will respond to this.’

The new national legislation is based on Rory’s Regulations, named after Rory Staunton. They require all hospitals in New York to have a sepsis protocol

“The torture we’ve had to live with for the last 12 years, there’s nothing that will make it worse,” Rory’s father, Ciaran Staunton, told DailyMail.com

The new legislation mirrors Rory’s Regulations, a law passed in 2013 in the family’s home state of New York that requires all hospitals in the state to have a sepsis protocol and report statistics to the state.

The law was championed by the Staunton family and named after Rory.

Schools in the state have a sepsis curriculum, and medical professionals seeking to renew their licenses are required to take a course on the subject.

Mr. Staunton estimates the law has saved 20,000 lives in New York since 2014.

He told this website: “Last year we talked to Senator Schumer’s office and others and it was decided that there needed to be a federal sepsis law to make sure that children and adults from coast to coast are protected from sepsis.

“It’s the same treatment you get in a hospital in Massachusetts or California if you go in for signs of a stroke or a heart attack or something else. So why should it be luck of the draw if you go to a hospital with sepsis?”

In the years since Rory’s death, the Stauntons, who also have a younger daughter, have channeled their grief into setting up END TO SEPSISa non-profit organization dedicated to ending deaths from sepsis in children and adults worldwide.

The goal, they said, is to prevent other families from experiencing a loss like theirs and to ensure that everyone with sepsis can get treatment quickly. Health officials are urging patients to get the right treatment within the hour, the so-called “Golden Hour,” after which organs can start to fail.

“The torture we have endured over the last 12 years will not get worse,” Staunton said.

“Rory came with me on a Tuesday night, and I picked out pizza for him. The following Tuesday we had to pick out a coffin for him. That’s what we want to avoid in America.”