Having cut himself on the basketball court 2012 12-year-old Rory Staunton passed away days later due to sepsis. Since his tragic death Orlaith and Ciaran Staunton have established the Rory Staunton Foundation to spread the word and change medical regulations surrounding the deadly killer.

Here Rory’s mother shares her thoughts on her recent visit to the Center of Disease Control.

“Nothing I can say or do can bring back your son.” So said Dr. Thomas Frieden of the CDC (Center for Disease Control) to us on Friday last.

No, tragically nothing can bring him back. And our days are spent thinking about what could have been done differently. The “if only’s” are endless.

IF ONLY the CDC had engaged the public and medical professionals in a discussion on sepsis before Rory died.

IF ONLY the CDC had acted in June 2011 when their own report stated that hospitalizations for sepsis and septicemia had more than doubled between 2000 and 2008.

IF ONLY the CDC had listened to Dr. Carl Flatley in 2002, when his daughter Erin died from sepsis, aged just 23. Since then, Dr. Flatley has spearheaded the fight for sepsis recognition. Since then, almost 3 million Americans have died.

When we learned that sepsis had caused Rory’s death, we checked the CDC website immediately to see what information was listed under sepsis. There was nothing in the A-Z index in 2012. Nothing. It’s 2014 and there is still nothing listed in the current A-Z index.

According to its own mission statement, the CDC “works 24/7 to protect America from health, safety and security threats.”

Sepsis kills Americans indiscriminately. It is an equal opportunity killer. It kills more Americans than other better-known diseases like AIDS

But we saw no mention of sepsis in the information on the walls of the CDC headquarters in Atlanta, no mention of sepsis in the CDC literature. The only mention of sepsis was in the information packages we brought from the Rory Staunton Foundation.

We met with the CDC for a three-hour collaborative discussion. As we waited on the runway at Atlanta for the flight back to New York Dr. Frieden tweeted about meeting with us.

Met with the Rory Staunton Foundation today. Really amazing work that they are doing to prevent #sepsis: http://t.co/9lafnSiTpr

— Dr. Tom Frieden (@DrFriedenCDC) January 24, 2014
We hope this is a sign of change. We welcome change.