Dear Rory

 

Rory Drawing BWRory, we miss your smile, your funny comeback lines, your noise, and the fun… Yes, the glorious fun of spending time with you.

The silence is now deafening. It breaks my heart to see your wonderful dad, your pal, sob from loneliness. He didn’t deserve this tragedy. Your little sister bravely faces it each day.

She’s happy though Rory. She’s in a wonderful new school, the one she secretly talked to you about; OLQM. They won the Basketball Championship this year; we missed you so much that day. She swims, she now “owns” your iPad, and she’s looking forward to a summer of surfing.

Your loss though is a huge void in her life; you shared so much banter together.

I miss you my little man (all 5 feet 9 inches of you). You were my fellow book reader; the book we bought you about Steve Jobs, that you so desperately wanted to read, lies unread. Maybe you met him?

You and I had just been talking a year ago about A Separate Peace by John Knowles. We both disliked the book, but it did get us thinking and talking about friendships. We were best friends, you and I. We kept secrets.

Capt. Sully Sullenberger said he thought your death would bring about a seismic change. It has. New York State has issued new regulations in your name “Rory’s Regulations” so that what happened to you won’t happen to any other child. Friends and politicians have been very helpful in moving this forward; there is a lot of good in this world, we see it every day.

There are some other special things going to happen in the future that we’re excited about, but we can’t talk about them just yet. Just know, we will make you proud.

A lot of bad things happened to you, Rory, in those last precious days of your life. People did not listen to you or to us. Many people and institutions did not do their best by you. This is why you died.

Mahatma Gandhi said, “There is a higher court than courts of justice and that is the court of conscience. It supersedes all other courts.” We will work tirelessly for justice, Rory. Each person, and they know who they are, must now be attending their own courts of conscience.

April 1 is not a day we will ever wish to remember. We love to remember the days you lived and oh, how you lived. Captain Sullenberger, your hero, said you lived a remarkable life.

Niall, your uncle has written many times about you. Jim Dwyer of The New York Times investigated your death and has written some wonderful articles about you and Sepsis. Maureen Dowd also from The New York Times wrote a splendid column.

Many other writers and broadcasters have been moved to tell the world about you, an extraordinary 12-year-old boy with extraordinary dreams.

Your teachers spoke of your kindness, leadership, humor and the sense they got from you that you were going to change the world in some great way. Your loving circle of friends feel they have not only lost a great friend but that they have lost a future president of the United States.

Our families are devastated; you were so special to them. Our friends tear up when they talk about you. You were loved my darling, so loved.

Rory, we’re going to catch this Sepsis thing.

People, come on. No one seemed to know about Sepsis until Rory died but think about this: Sepsis is the largest killer of children in the world. Sepsis affects 26 million people every year and one third die. It is increasing at an annual rate of 8 to 13 percent.

And here’s more. It’s more common than heart attacks and kills far more people than AIDS. We know it strikes with devastating ferocity. And listen up: Sepsis respects no age, race, gender or economic status. We know the cure, we just have to suspect sepsis and treat it immediately. Tell people about sepsis, a simple cut or a scrape is all it takes for infection to set in. Tell people and save lives.

Rory, we made a decision not to have a big family get-together on April 1, the anniversary of the day you cruelly died. We will plant a tree in one of your favorite places and your little cousins Patrick and Fionn Rory (who was born after you left) will help. You would have liked that.

We will walk to the top of the Hill of Tara, the meeting place of the High Kings of Ireland and we will release balloons at Raith na Riogh (the Fort of the Kings) with special messages to you. I hope you see them.

More than anything know that you are so much loved still by everyone. Gilly Cullen created this beautiful portrait in your honor; friends and strangers have done the kindest of acts.

Doctors, good doctors, have worked hard with us for change. People are giving their time fiercely and freely in order to change the world so there won’t be another tragic death like yours.

Tragically Rory, your melody was left unsung in full. You were so looking forward to your life ahead. But you sang a wonderful tune in your 12 short years. We have all learned from your life. We who loved you were part of the melody you were creating. Without you it is hard, but we will continue your song and hope we make you proud.

Torture. As one special person in your life wrote: “It’s as if a Gordian Knot were entwined in an enigma, wrapped in cruelty.” No answer and a lifetime of loss.

Rory Staunton – you were our best 12 years.

Sepsis You Stole His Life But You Will NEVER Steal His Memory

March 17 2013

St. Patrick’s Day 2012 – A Perfect Day

It was a magical day.

Rory, up early, traveled to the city with his friend Cian to spend the morning at the Mayor’s breakfast at Gracie Mansion.

One glance at him as he walked out the door with his dad made me stop in my tracks.

It is now one of my dearest, fondest memories. Rory: tall, handsome and strong; smiling and full of life; enthusiastic and so proud, as always, to be Irish.

St Patrick’s Day offered a day away from the ridiculous and insane homework for his school’s 7th grade class.

We were all breathing easy, very easy.

Ciaran, Kathleen, Rory and I walked up Fifth Avenue as a family. Rory and Kathleen smiling and giggling in the sunshine, smiling with Cian.

I close my eyes now and Rory is there: tall, confident, head high, sun shining, hair blazing, smiling.

Later we drank green shamrock shakes in the park, talking and laughing with our friends, Cian, Oisin, and the O’Sheas. Rory brought Irish chocolate to our beautiful Italian sister, Cynthia.

Later still, at home, we all got cozy, real cozy. We were happy, carefree. It was truly a magical St. Patrick’s Day.

We were all unaware of the insanity and tragedy that lay just weeks ahead.

******

So strong, so wild and brave he was. I’ll mourn his loss too sore,

When thinking that I’ll hear the laugh or springing step no more.

Ah, cure the times and sad the loss, my heart to crucify,

O who will mourn my broken heart? I’ve lost my laughing boy.

– Brendan Behan

 

Liam’s Reading Day – March 7th

Six-year-old Liam Carcione from Cork loved reading and books. He especially liked Roald Dahl and The Goosebumps series. He lived in Cork with his younger sister Rosa, his mom Eibhlís and his dad Jay. His dad was from New York and grew up on Long Island and in Woodside, Queens. Jay and Eibhlís got married in America in 2003 and returned to Ireland where Liam was born in 2005. Rosa followed two years later in April 2007.

Liam died from sepsis on April 2, 2012, just 12 days before his seventh birthday.

Like us, tragedy struck their family in April 2012. Liam contracted chickenpox, a deadly invasive Group A Strep bacterliam_nia entered his body, and he died on April 2 as a result of sepsis.

Like our beloved Rory, Liam died suddenly. In a moment he was gone. Eibhlís describes it like being hit by a tsunami. Sadly, Liam is another young, tragic victim of sepsis. And the Carciones are another family left shattered by a condition they had no knowledge of – until it took their beautiful child.

Thursday, March 7 is World Book Day and in a loving tribute to Liam, his school will rename and celebrate the day as “Lá Liam Leitheoireachta,” or Liam’s Reading Day.

The children from Liam’s school will dress up as characters from a book, there will be a school party and each child will donate a book from home to a library being decorated in Liam’s memory. A library that will be known as “Leabharlann Liam,” or Liam’s Library.

Liam loved books, he came from a family steeped in words – his dad is a journalist and his mom is a writer, teacher and poet.

Liam kept a journal, and in it he wrote that he wanted to be a writer when he grew up and live “0 kilometers from home.”

Kathleen and Rosa have lost two wonderful big brothers. The world has lost two beautiful children.

We didn’t know the Carcione family until after Rory died, but we believe they and their school are an inspiration in remembering a young boy, Liam, who found love and joy in reading.

Join us on March 7 to honor Liam Carcione in “Lá Liam,” or Liam’s Day for World Book Day 2013.

 

For Rory

Rory’s uncle Niall wrote this beautiful poem.photopng

For Rory…

Another day without him,                                                                                 
The red head we loved,
The smile, the stare,
The laugh, the love,
Where are you Rory?
Apart from in our hearts,
We wonder with no answer,
And only the memories,
To keep us sane.

– Niall O’Dowd

Rory’s Africa Project

Rory Staunton..The Boy We Lost
Let The Poem Speak For Itself

Rory Staunton Foundation, Sepsis Education, Awareness and Prevention

 

Wanted Urgently: ‘Human Skills’ in health care

In a New York Times article this week, it was reported that the airline industry is at its safest since the dawn of the jet age. In the last five years, the death risk for airline passengers in the U.S. has been one in 45 million flights. There are several reasons for this and according to the Chairwoman of the National Transportation Safety Board, the airline industry now has a “much more proactive approach to safety.”

Let’s compare this to the level of safety in the Health Care Industry where over 200,000 people die of preventable deaths each year. This is equivalent to 20 large jet liners crashing every week with no survivors. Why no major fuss? It’s because many people in the Health Care Industry consider these 200,000 deaths to be inevitable and there is a lack of public awareness of these figures.

Captain Sully Sullenberger, among others, has called for an independent agency, similar to that of the National safety-firstTransportation Safety Agency, to be set up for the Health Care Industry. It would be an excellent idea to have an independent agency monitor medical concerns, similar to the NTSB, an agency that is non-disciplinary, where problems could be raised and shared, where formal lessons could be learned. We believe this would prevent many needless deaths.

Captain Sullenberger speaks to the need for physician and medical professionals to be taught “human skills.” He defines human skills as leadership, as creating a culture of team building, as sharing input, as sharing a sense of responsibility and as sharing the feeling among a team that each member, regardless of their position, has a role in a patient’s care thereby maintaining an open channel of communication.

Rory Staunton’s death was preventable. Tragically, there was no open channel of communication in place during the tragic sequence of events that led to his death.

We have to learn from Rory’s tragic death. Safety begins in the boardroom with the Board of Trustees and administrators. It is they that can build a culture of trust and change. What is needed is a real culture of trust, not a pretend culture. There are many islands of good care but these islands need to have less water in between them.

Greater public awareness of these problems and better leadership is urgently required. In a recent interview, Captain Sullenberger says that the problem is systemic, huge and immediate. We agree.

His name is Ciaran. That’s his name!

Rory’s Nursery School teacher records his thoughts about his special Daddy when Rory was just three years old.
It’s your special day, Ciaran. We love you.
The world is not the same without you Rory…

Rory about Ciaran

 

A Quote from Rory’s Hero and America’s Hero

Sully pic“The facts tell us what to do and how to do it, but
it is our humanity which tells us that we must
do something and why we must do it.”
– Sully Sullenberger

My sister Derbhal, our Fairy Godmother

On Friday, March 30th, 2012 our world came crashing down. Fear, like we had never known before, took over our entire bodies. Rory was seriously ill. It was about ten o’ clock on that night that we first realized our boy faced the battle of his life, one that he ultimately lost, having fought it so bravely on his own. Our family gathered. Kathleen’s Fairy Godmother took a phone call in Ireland in the middle of the night. The following day, we turned around and she was there, having moved mountains to get aboard an already overbooked flight. She stood with us, cried with us, and loved us.

Our six word essay:
Derbhal Help! I’m here. It’s o.k.

Hurray For The Good Guys!

On October 26th, 2012 we made our way to the New York Academy of Medicine. We had been asked to address a Sepsis Symposium there being convened by Nirav R. Shah, the State Health Commissioner. It is always bittersweet to talk about Rory in public; on the one hand you want to talk about him forever, to tell everyone everything he achieved in his 12 short years and then on the other hand, time has not healed the gaping wounds in our hearts, so it is always, always, an emotional experience.

The 5th Avenue room was full to capacity and we heard from many, many, wonderful (and a few not so wonderful) doctors that have been working on sepsis awareness and research for many years. It was a humbling, enlightening experience. We had not spent time with Commissioner Shah before and from the outset he was very impressive. He sat throughout the seminar taking notes, listening intently. He seemed very sincere, very interested.Shah and Cuomo

At the end of the seminar he spoke, and he promised that, because of the critical situation we now face regarding sepsis, he would recommend to the Governor that New York be the first state in the nation to demand sepsis protocols for hospitals throughout the state. He would do this in honor of Rory Staunton, he said.

It was a memorable moment, again bittersweet. We wondered on the way home, and in the months afterwards, if it would happen. Dr. Shah and his staff assured us it would.

In his State-of-the-State address on January 16, 2013, Governor Andrew Cuomo mandated statewide sepsis protocols to identify and swiftly treat sepsis. New York State became the first State in the Nation to do this. It is estimated that these protocols will save 5,000 to 8,000 lives per year and reduce other tragic and costly consequences of sepsis.

Well Done Governor Cuomo and Commissioner Shah!