Editors Note: Rory Staunton aged 12 died from sepsis on April 1st 2012. His death has led to a major national campaign to end sepsis and to help children get better care in emergency rooms. Orlaith Staunton wrote this letter to her  son on the 1st anniversary of his death. It is also on rorystaunton.com

Rory, 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 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 5ft 9inchesof 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 everyday.

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 and each person, and they know who they are, must now be attending their own courts of conscience.

April 1st 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 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 8-13%.

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...it 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 scape is all it takes for infection to set in. Tell people and save lives.

We made a decision not to have a big family get together on April 1st, 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 a 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 of 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.

Read more at the Rory Staunton Foundation at www.rorystaunton.com.