Category Archives: Events

Organ Donation Group Comforts Families Who Didn’t Donate 

The Aido group of Alessandria (a volunteer group in the Piedmont region of Northern Italy) and the Alessandria hospital will soon open a “Nicholas’ room” (named for ‘our’ Nicholas) to give psychological support not just to the families of organ donors but also to those who decided not to donate. “These people do not deserve to be judged, but must be supported and helped,” the group’s president, Nadia Biancato, said. 

“That ‘no’ said in a dramatic moment can lead to beautiful unselfish deeds in the future.” It can also stimulate them to talk of their experience so that others might make different decisions about organ donation, she added. 

Aido Alessandria - Nicholas' room

The introduction of “Nicholas’ room” project

The plan is to extend the project to all other areas of Piedmont.” The City of Health hospital in Turin, Piedmont’s capital, already runs a similar project for donor families and has been very pleased with the results but the Alessandria version is the first in Italy to include non-donors.
Here is the link to a local news source (in Italian):

https://radiogold.it/cronaca/315900-alessandria-sostegno-psicologico-famiglie-donazione-organi/

 

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Italian Organ Donation Rates Rebound to Record Levels

Organ donation rates in Italy are of great interest to Maggie and me because when our seven-year old son, Nicholas, became a donor there 27 years ago, the rates were almost the lowest in Western Europe. They are now among the highest. The latest official figures, just out, show donation rates have more than made up the decline that came with COVID-19 in 2020. Last year they went up 12.1 percent, reaching a rate of 22.9 per million of the population. When Nicholas was killed it was a little over 6 per million.

organ donation report 2021 by region in Italy

Source: Italian National Transplant Center (CNT) and SITO (Italian Society for Organ Donation) annual report

Many people express surprise that donations are such a low percentage around the world (“only 22 per million?” they say) but that is because donating organs is possible for only about 1 percent of the population, mostly people who die of a blow to the head as in a road accident, a fall or violence. The new figures show that 69 percent of Italians say they would become donors if they are eligible. This is a phenomenal change and people and institutions of all kinds have played their part.

Transplants over the years - preliminary data on 2021

Source: Italian National Transplant Center and SITO report – preliminary data

Speaking only of our own campaign, they range from Pope John Paul II — who showed how deeply moved he was by Nicholas’ death and the generous-hearted response of the Italian people, by authorizing the casting of a magnificent bell with the name of Nicholas and his seven recipients on it — to ordinary people all over Italy,  some in their thirties and forties who were then just children, even people not born at the time but who have heard the story from their parents or teachers.

IMG_2755 SITO CONFERENCE, ROME 2016

Reg Green speaks at SITO conference (Rome, November 2016)

Most of the individual names will be unfamiliar to readers but they show the variety of our allies. First is Andrea Scarabelli, with whom I have worked hand-in-glove from within days of Nicholas’ death, and who I call Nicholas’ best friend. Without him ‘the Nicholas Effect’ could easily have petered out after a few years instead of being a force virtually every adult Italian still knows about.

     So let me take this opportunity to publicly thank the Ministry of Health, the National Bioethics Committee, the National Transplantation Center and the National Institute of Health, in all of which we have close contacts. And, thank you, Italian journalists for recognizing the importance of organ donation even when it was not making the headlines: your ability to see the suffering of real people behind the statistics made me feel very proud of being a journalist too. But especially I want to thank Luca Dini, former editor of Vanity Fair Italy and now editor of “F” magazine, Maria Emilia Bonaccorso, the health editor and Livia Parisi, the health reporter at ANSA, who have been the three media people most loyal to Nicholas’ memory.

IMG_2772 SITO CONFERENCE, ROME 2016

At SITO conference (Rome, November 2016)

Thanks also to those branches I have visited of Aido (the volunteer group that works with donor families and recipients) with whom I have had some of the most enthusiastic meetings of my life — and especially the heroic and tenacious Piero Gallo at Aido Giussano — whose commitment has never wavered from the moment I met him — and to three of the most beautiful women in the world (Jamie Lee Curtis, Alessia Marcuzzi and Sophia Loren) all of whom have told me personally how deeply moved they were  by Nicholas’ story. Thanks also to Professor Natale De Santo and other professors of medicine, transplant physicians and nurses, to Giusy De Rosa, a teacher who I first met at one of the 31 schools that, all over Italy from the Alps to Sicily, were named for Nicholas, to Marco Galbiati (another father who lost a beloved son and joined us by collecting fifty thousand signatures after we began a national campaign to allow donor families to meet recipients) and the thousands — yes, thousands — of other people who have worked with us in the last 27 years! With such enlightened activists is it any wonder that Italian donation rates are now among the highest in the world?

Reg Green

 

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Meeting Recipients One Of My Most Fulfilling Moments

February 4th will be the 26th anniversary when my wife, Maggie, and I first met six of the seven people whose lives were transformed because they received the organs or corneas of my seven-year old son, Nicholas Green. Nicholas, an American boy, was shot in a bungled robbery on the Salerno to Reggio Calabria autostrada four months earlier while we were on a family vacation. The seventh recipient was doing well but was still recovering in hospital.

    Meeting them in Messina, in an event arranged by the Bonino-Pulejo Foundation, was one of the most fulfilling events of my life. (Video: https://www.youtube.com/watch?v=IzCKZBfPcGE).

Until then they were just names. Seeing them brought it home to me in the most vivid way how much devastation our simple decision had saved.

Meeting with all the recipients a year after the first time

Meeting all the recipients a year later
Courtesy of OGGI magazine (1996)

     Twenty-six years later five of the recipients are still living productive lives, although one is back on dialysis and another had to have a second corneal transplant.

      That meeting, however, would be impossible in Italy now. In 1999 a law was passed forbidding healthcare personnel to divulge any information about either organ donors or recipients. It had the best of motives – to ensure privacy — but has had the insensitive, some would say cruel, result that the two families can never have more than the most basic information about each other. They cannot even exchange anonymous letters.

   But now a bill has been introduced in Parliament to allow the two sides to write to each other, if both want to, or even meet, under conditions set by their doctors. Dr. Pierpaolo Sileri, Deputy Minister of Health comments, “The liberalization of contacts between recipients and donor families is a deed of humanity and civilization, a right and proper act”.

    This is an astounding change. When I started a campaign in 2016 to liberalize contacts, I could not get a single doctor or health care official to join me — only a friend from Rome, Andrea Scarabelli. We were so alone we became known as Don Quixote and Sancho Panza.

     But when we opened our campaign enough open-minded people in the media were able to visualize how comforting it is for donor families to learn what a difference their donation has made. Some of the largest newspapers published major articles, some of the largest television shows ran interviews, radio interviews reached drivers stuck in traffic. From being a subject that was as dead as the dodo, people all over Italy began to ask the health authorities: “If two families with as close a bond as this want to contact each other, why should some bureaucrat have the power so say no?” Marco Galbiati, of Lecco, whose 15-year old son, Ricky, died in 2017, collected 50,000 signatures to repeal the law.

     But we did not have to rely on emotion. In the United States, where contacts are not only allowed but have been strongly recommended for nearly thirty years, tens of thousands of families have written to each other and some of them have met. Clinically-documented reports show the great majority of these contacts have been therapeutic for both sides.

    After studying the evidence, each of the main health authorities — the National Bioethics Committee, the National Institute of Health and the National Transplant Center — spoke in favor of allowing contacts. The bill in Parliament embodies their recommendations.

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25th Anniversary of Nicholas death and Donation. An article on the Santa Rosa Press Democrat

Article by Chris Smith  – September 26, 2019 – Santa Rosa Press Democrat

Link to the article: https://www.pressdemocrat.com/news/10096291-181/smith-25-years-after-nicholas?artslide=0&sba=AAS

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Article and photos from 2018 KODA conference in Seul, South Korea

September 2018 – Speech and conference at the 2018 KODA (Korea Organ Donation Agency) Global Forum

 

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Bike Race

On organ donation day in Italy (May 29), a cycling team led by Francesco Avanzini, a 62 year-old man who had a kidney transplant 29 years ago, cycled the very tough 50 kilometers, along the glorious coast from Sestri Levante to Genoa. It was like many other activities for organ donation that day but for me it had not one, not two, but three special features. First, I have become friends with Francesco and have seen a degree of moral courage in him that matches the physical courage he needed to stay alive. Second, the race went close to the very first place I stayed in Italy 65 (!) years ago when I had saved enough money to go abroad for the first time. And third could I, as a young man, have ever imagined on that first visit that a race would one day pass this way that would end at a bridge named for my own son?

genoa bridge sign

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A Boy Joins His Heroes

A garden with one of the loveliest views in Greece has been dedicated to Nicholas by the Hellenic College of Nephrology. It stands dramatically on the edge of a soaring hill overlooking the city and bay of Volos, the port from which the Argonauts set sail to find the golden fleece.

Greece - Nicholas Green Park

It is a perfect setting for a little boy who thrilled to the classical myths. (When I read him the story of the blinded Polyphemus running his hands in a rage through the woolly coating of his sheep trying to find Ulysses and his men who were clinging underneath, I thought he would burst.)
The garden joins the 112 schools, squares, streets, parks – and one bridge – named for him in Italy. The college president, Dr. Georgios Efstratiadis and his board see the garden as a way to remind all who go there of the tens of thousands of kidney patients whose lives were saved by a transplant.

            I am taking this opportunity to thank everyone else involved, including the friendly management and staff of the Xenia Palace hotel in Portaria, on whose grounds the garden stands, and to Dr. Athanasios Diamandopoulos, a former president of the college and Professor Natale De Santo, professor emeritus at Second University of Naples, who together spearheaded this project.

The garden adds another timeless element to Nicholas’ story, who died in a hospital overlooking the Straits of Messina, where thousands of years ago Ulysses, again in the kind of fearful danger that puts young boys on the edge of their seats, navigated his ship through the narrow channel between Scylla, the monstrous rock and Charybdis, the monstrous whirlpool.

Here is a link to a beautiful video made by Giusy De Rosa, a schoolteacher in Caserta, Italy, of cities with “Nicholas’ places. https://www.youtube.com/watch?v=UKtm2CQP8tg

 

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Children, Once Too Ill to Walk Across a Room, Take to the Ski Slopes

High in the Swiss Alps, in the little town of Anzere, 34 children from around the world, aged 6 to 17, were preparing to ski down a 45 degree slope in a revered competition that at one time none of them could have dreamed of being in.

It was a perfect day for the climax of the World Winter Transplant Games: the Nicholas Cup.

The weather was calm and clear, the sun dazzling on the pure white snow. The course was treacherous, however, hard ice in places, difficult to dig in the edges of the skis to cut the angles round the gates and more difficult than for the usual run of skiers because, a week earlier, none of these children had ever been on skis. Until then, some – such as those from Tunisia, Hong Kong and Israel – had never seen snow. “I falled over a few times at first,” one small face said proudly. “But I’m alright now.”

Nicholas Cup, Anzere, March 2012

Day 1: First hesitant steps.

But the real challenge was of an order of magnitude greater than all that. All of  them had once been so ill that their only cure was an organ transplant: a new heart or liver, kidneys or lungs to replace the ones that were dying inside them.

Some had been desperately sick at birth – yellow or blue or a lurid shade of green. One had kidneys the size of peas. A third had to be fed through a tube and, says his mother, “for the first two years he never laughed.” Some could not walk across a room without stopping for breath. Others had lived normal lives, until felled by a virus that at first seemed no more severe than a headache. The first that one father knew of a problem was a scream in the night as one of his daughters heard her younger sister collapse on the floor and then kept her alive for forty minutes as the ambulance crew talked him through the CPR procedure.

For many of these children any form of exercise, let alone a competition mixing risk with athletic agility, was physically impossible. On top of that the years of  dependence could have eaten away fatally at their self-confidence. Yet, on the day of the race, one by one the little figures appeared at the starting gate, high on the mountainside. Some came down with what the commentator charitably called “a racing snowplow” style and one or two held on to the instructors. But most tackled the course with assurance and a few with insouciance.

March 8-9 Nicholas Cup 2012

Day 7: “What’s the problem?”

The triumph, however, was collective: these are not sickly lives prolonged by an experimental medical procedure but children who, if anything, perform better than other kids because they exercise and eat more healthily and, having learned at close quarters how precious life is, are determined to make the most of it.

The competition was started by a liver recipient, Liz Schick, a British-born mother of two living in Switzerland who, like so many recipients, wanted to say ‘thank you’ to the world and has done it in an unforgettable way. As one 15-year old girl, who had a transplant when she was 2, and has been shunted between homes to wherever the appropriate medical treatment could be obtained, said afterward to her mother, “This was the best thing I ever did.”

From Reg Green’s book “87 And Still Wandering About.” 2016. www.authorhouse.com.

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Strikebreakers

Driving to another meeting in Sicily, without much time to spare, we suddenly came across twenty or so burly men who had set up a road block, strikers protesting the closing of the local plant of an oil company and the subsequent loss of jobs. A long line of drivers were arguing that they should be let through: I imagined kids waiting to be picked up at school, aged parents hanging around hospital waiting rooms, concerts, meals and homework missed. But the strikers were adamant. “Wait here till we open the road. This is important to us.” Nevertheless, my driver inched forward until we were alongside the strikers’ leader. “Where are you going? Stay in line with everyone else,” he was told brusquely. “I’ve got the father of Nicholas Green with me, the American child who was shot on the freeway in Calabria. He’s going to give a talk on organ donation at a school,” my driver replied. A skeptical face ducked down by the window, looked at me quizzically, then smiled broadly. “Let this one through,” he said to his pals and waved us on majestically.

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Donor is Like a Member of the Family

On a recent visit to Sicily, where four of Nicholas’ recipients live, I was invited to speak to the kindergartners at the Rita Atria School in Palermo, who listened breathlessly to the tale of a boy, just a year or two older than themselves, who saved other children when no one else in the world could. Afterward I talked with the principal about the visit Maggie and I made to the same school 21 years ago and were received with the same rapt attention then too. It dawned on me that these were the little children of the little children we talked to on that first visit: a whole generation of families for whom Nicholas has been part of their lives.

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