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Thank you and have a healthy, happy, and generous giving season.
Below is Orlaith’s story and call to action which was featured in The Huffington Post. Please read and share – the information here could save a life.
I am a mother who lost a child who could have been saved.
One Wednesday in March of 2012 my son came home from school with two band aids on his arm. He excitedly told me that he had skidded when chasing a basketball and that the gym teacher placed the band aids on his arm. Hurray! I said, well done. A little after midnight I heard him throwing up in the bathroom. When I brought him back to bed he complained of leg pain. I rubbed his leg and eased him back to sleep. The next morning he woke with a fever and we called his pediatrician who agreed to see him. Although she recorded a fever of 102 degrees, a 140 pulse, severe leg pain, blotchy skin and 36 breaths a minute, she insisted to me that there was nothing to worry about, that he had a stomach bug; she said he would be fine and not to worry but to take him to the emergency room for rehydration. At the hospital the ER doctors concurred with the pediatrician’s diagnosis and sent us home with a prescription for Zofran, an anti-nausea drug.
The following day, Friday, when Rory’s symptoms didn’t improve we returned to the hospital. On Sunday he was dead from septic shock.
Every minute of every day I miss my son desperately. Rory adored his little sister, Kathleen. He loved to ride his bike and he loved to talk politics. Rory wanted to be a pilot and had taken flying lessons; Captain “Sully” Sullenberger was his hero. I told him and his little sister that I would die if anything ever happened to them, he would smile a lovely smile at me and I would think “nothing will ever happen.”
Rory’s death was so unexpected and horrifying that I thought for sure it had to be something rare. What could possibly kill a 5ft 9”, 160lb healthy young boy so swiftly?
Rory died from sepsis and I have since learned that sepsis deaths are in fact incredibly common. I know now that sepsis kills over 258,000 Americans every year. The scrape on Rory’s arm when he fell playing basketball had become infected, chemicals in his body that usually fight infection instead triggered inflammatory reaction into the bloodstream and began to affect the function of his organs, unfortunately this can happen with any type of infection no matter how big or small. My family and I had never heard the word sepsis before and as we now know, neither have nearly 60% of Americans.
Rory could have been saved, my son Rory could have been saved. I get a pain in my heart every time I think about that, which is all the time. Every day I remind myself that we are not waiting for a cure for sepsis the way we are waiting for a cure for cancer. Sepsis is preventable and treatable if found early and treated with broad spectrum antibiotics and IV fluids, that’s all. At the time I didn’t know to ask “could Rory have sepsis?” and none of the medical professionals I entrusted with his care thought about sepsis even though he had all the signs and they should have known.
The signs of sepsis are broad, and often mimic flu like symptoms including fever, chills, pain, shortness of breath, mottled skin and dizziness. Parents, caregivers and educators have to learn to look for these signs and to think about sepsis so they can notice if “something is different” and ask about sepsis.
After Rory’s death I searched for information on what had killed my son and came up empty handed. The Centers for Disease Control (CDC) didn’t list sepsis on it’s website. I couldn’t believe there was something out there that killed so many Americans; one person dies of sepsis every two minutes in the United States…it is also the biggest killer of children worldwide and it wasn’t even mentioned on the CDC’s website.
My husband Ciaran and I set up the Rory Staunton Foundation for Sepsis Prevention (www.rorystauntonfoundation.com). Our mission is to spare other families the pain and heartbreak that we have endured. In 2013 we succeeded in getting mandatory sepsis protocols adopted in New York State saving between 5,000-8,000 lives every year. We lobbied the CDC and in August, four years after Rory’s death, they deemed sepsis a “medical emergency.” We set up the National Family Council on Sepsis to act as a support and advocacy network for families of sepsis and we created a public education program about knowing the signs of sepsis. Our work is ongoing; this past weekend I heard from a mom who was on her way to pick up her seventeen year old daughter’s autopsy report. The cause of death was sepsis. She asked me, “How come I didn’t know the signs?”
Last month I discovered that I had been selected as one of 10 L’Oréal Women of Worth Honorees for my work raising awareness of sepsis and improving sepsis outcomes. I am very grateful to L’Oréal for this opportunity to share my story and to give sepsis the national platform it so desperately needs.
Please take the time to talk about sepsis to others, I wish someone had talked about sepsis to me and I believe my son would be alive today if I had known the signs of sepsis.
Watch our short video below to learn about what we do here at the Rory Staunton Foundation for Sepsis Prevention and all that we have achieved over the last four years. You can also find out how you can get involved and help us spread awareness about sepsis. Thanks for watching!
You can also help us by making a tax-deductible donation by clicking here.
As you well know, Rory’s death four years ago changed my life completely; it forced me to take on challenges and fight battles I certainly never wanted to undertake. I never imagined that I would become the co-founder of a national advocacy organization, testify before Congress, or appear on national television.
I also never thought I would be honored as a L’Oréal 2016 Woman of Worth. Today, I am excited to share this news with you: I have been selected as one of the 10 L’Oréal’s 2016 Women of Worth (http://bit.ly/2d2EES3) honorees, chosen from 6,200 nominations. Women of Worth honors women who have made an extraordinary impact in their communities. In choosing me, L’Oréal is identifying sepsis as a serious issue they want to highlight, and for that I am grateful.
A public voting period has ended to choose THE National Honoree for 2016. The Nationall Honoree will recieve a further 25,000 towards their cause. All honorees will be celebrated at a celebration Gala on November 15th at the Pierre Hotel in New York City.
Since meeting with the Rory Staunton Foundation for Sepsis Prevention and representatives from the National Family Council on Sepsis last year, Pennsylvania’s Health Secretary, Karen Murphy, has become a vocal and committed proponent of mandatory sepsis protocols in her state. Yesterday, at the Stopping Sepsis: Saving Lives in Pennsylvania Conference organized by the Pennsylvania Department of Health and held in Harrisburg, Secretary Murphy declared that, “Pennsylvania needs to implement new protocols focused on stopping sepsis in every hospital. Sepsis is a critical health issue that can affect anyone.”
The conference was the first-ever sepsis summit held in the state and was organized to introduce and discuss the proposed sepsis regulations. The conference was also the largest single gathering of chief medical, nursing, and quality officers ever convened in Pennsylvania. More than 200 representatives were in attendance from hospitals across the Commonwealth. Experts discussed new statewide sepsis policies aimed at the drastic reduction of sepsis deaths. Sepsis kills more than 9,000 Pennsylvanians each year.
Chris Aiello, a founding member of the National Family Council on Sepsis and the father of Emily Aiello who died from sepsis at the age of 15, helped open the event by sharing his own experience and his belief that sepsis protocols are critical to en ding preventable deaths from sepsis.
The Rory Staunton Foundation looks forward to Pennsylvania becoming the next “sepsis safe” state, following in the footsteps of New York and Illinois, where sepsis protocols are already in place and saving lives. The Foundation’s goal is to see mandatory sepsis protocols in every state by 2020.
It’s difficult to explain in a small package what sepsis is, I can find a definition but it’s impossible to describe the devastation that comes with it. When someone you love dies from sepsis, it’s often with the speed of lightning and when someone survives, it’s with devastating effects including loss of limbs.
Four years ago when Rory died, like other sepsis victims, we thought it was something rare that attacked him. We looked for answers and couldn’t find them. The Federal Government, represented by the CDC had no information,there was nowhere to go for support.
Today, because of our Foundation we have made steady progress. The CDC has now declared sepsis “a national emergency”, and the National Family Council on Sepsis exists to advocate, support and educate. We stand strong with Ann Ceschin, mom of Katie, with Liz and Tony Galbo, parents of Gabby, with Chris Aiello, dad to Emily, Vanessa, daughter to Wes and with the other families whose loved ones have died; together we are determined to remember.
Yesterday I was reminded why we go on; two messages, one from a mom, who was on her way to pick up her 17 year old daughters’ autopsy results revealing the cause of death to be sepsis, and another, a message from a young girl whose mom, she described as her best friend, had died from sepsis. Neither family had heard of sepsis or knew the signs.
So, I know we have more work to do because families are still being wiped out. When I got the honor of Women of Worth I was hesitant, because sepsis is only a tiny little bit about me, I don’t believe I need an award for what I have done, I am devastated, in fact during the photo shoot for L’Oréal, after “smiling” for hours I broke down and sobbed.
But you know what, good has come from this campaign-the circle of support has grown. I can’t give sepsis a headline or a short description but I can give it a name… “killer”. We are sick of hearing and retelling messages of death, but it’s our life, this is our cause, we would love to have heard four words before Rory got sick: “Could this be sepsis?” We didn’t know and we want to change that for others.
Because we still have so much work to do to educate about sepsis, I am asking you to continue to support our campaign for sepsis awareness, please vote in the the L’Oréal Women of Worth Campaign, we are half way through the voting period!
Please go to: and vote today and everyday through October 28th. Thank you.
This is one of my most favorite photographs of Rory – I just loved that little red hat. His hat was red and his sister Kathleen’s hat was pink. I can’t tell how many times I kissed his cheek in that little red hat.
When Rory and Kathleen got older of course we had to trade in the hats for something “older”. I remember folding Rory’s hat to put it away in his memory box. I remember thinking how lovely it would be for him to have his little red hat to show to his own children in years to come…
Since he died I have not opened his memory box, I have not looked at his little red hat. There are some things I have faced but this is not one of them. Sepsis, lack of knowledge of sepsis, and poor medicine killed my son. I know in my heart and soul that if I had known about sepsis Rory would be alive today.
I am embracing the L’Oréal Women of Worth campaign and competition to become the National Honoree because it will bring more awareness to sepsis. Everyone needs to know about this awful killer that can take your children, your loved ones, in a matter of hours or days. Sepsis took my little boy away – let’s get the word out there. Please vote for me each day until October 28th so we can use this platform to change the world. goo.gl/myTmAo
Last week, the Rory Staunton Foundation for Sepsis Prevention was invited to Sioux Falls, South Dakota, to address the South Dakota Association of Healthcare Organization’s (SDAHO) 90th Annual Convention. The SDAHO was celebrating “90 years of caring, advocacy and impact” and brought together more than 900 healthcare professionals from across the Great Plains region to share best practices, new innovations and emerging trends in improving patient care.
Ciaran shared his personal experience with sepsis and the work that the Rory Staunton Foundation does to improve the ability of hospitals to diagnose and treat the condition and to educate the public about its dangers and signs. During his visit he held several constructive meetings to advance the adoption of mandatory sepsis protocols in South Dakota. We hope that the Mount Rushmore State will soon join Illinois and New York in becoming #SepsisSafe!