A Letter to the Italian People, by Reg Green

(Press release sent to media on September  27, 2020)

As the 26th anniversary of the shooting death of my small son approaches (Nicholas Green, a seven-year old American boy on holiday in Italy was shot during an attempted robbery on September 29, 1994, died on October 1 and his organs and corneas were donated to seven people, four of them teenagers) Italy is on the verge of making the biggest change in how organ donor families and their recipients are treated since 1999.

      A group of legislators in Italy has introduced a bill to allow the two sides to write to each other, if both want to, and eventually meet.

    In an exchange of emails between Dr. Pierpaolo Sileri, the Deputy Minister of Health, and myself he today made this unambiguous statement of support for a change in the law. “The liberalization of the contacts between recipients and donor families is a deed of humanity and civilization, a right and proper act that must find its rightful position in a modification of the current legislation, the law 91/99. This battle can and must be driven forward“.

      In 2016 when I started this campaign with just one friend, Andrea Scarabelli from Rome, no one supported us. The opposition was so strong we called ourselves Don Quixote and Sancho Panza. 

     The dramatic change has happened because the media publicized our arguments and ordinary Italians saw the insensitivity, even cruelty, of the current law that effectively prevents the two sides in a transplant from knowing anything but the most basic facts about each other. Donor families don’t even know if their loved one’s recipients are still alive. Recipients can’t thank the people who rescued them when no one else could. Neither side can even send anonymous letters to the other, however much both want to.

(An article about the Letter to the Italians published by the Italian national newspaper ‘Il Corriere della Sera’)

     In 2016 the whole subject was taboo. Now people all over Italy are asking, ‘If two families with a bond as profound as this want to contact each other why should some bureaucrat be able to say no?’ Feelings like this (for example, one bereaved father, Marco Galbiati of Lecco collected 50,000 signatures calling for a change in the law when his 15-year old son, Ricky, died in 2017) and pressure from the media forced the National Transplant Center to refer the subject to the National Bioethics Committee. 

      But before proposing a change in the law committee members needed to see hard evidence, not just strong personal feelings. To them we sent data showing that in the United States tens of thousands of transplant families have written to each other and a minority of them have met. In the great majority of cases, the health authorities say, the results have helped the happiness and health of both sides. 

      After careful consideration, the Committee concluded that the liberalization of the communications was possible, on the lines we proposed, a huge breakthrough. Dr. Carlo Petrini, the National Institute of Health representative on the committee, later described the hard evidence we presented as “a major if not decisive” reason for their recommendation.

   That surprise decision has persuaded many other eminent names to support our cause.  Donor families may soon have the opportunity to end a lifetime of uncertainty by hearing directly from people whose lives they saved. 

     There is no feeling quite like contacting your loved one’s recipients: amazement that people whose lives were coming an end are now playing sports, starting careers and having babies, pride that you turned outward to help others when the pressure to turn inward in grief and despair was almost overwhelming and comfort that someone you loved has done so much to make the world a better place. I hope the bill will be passed with widespread support.”

Here is the full statement by Sen. Dr. Pierpaolo Sileri, Deputy Minister of Health in Italy:

  “The liberalization of the contacts between recipients and donor families is a deed of humanity and civilization, a right and proper act that must find its rightful position in a modification of the current legislation, the law 91/99. This battle can and must be driven forward, creating a structured system that, beyond the law, can guide recipients and donor families through their grief process. I want to thank once again Nicholas’ family who, without their faith in humanity and will to contribute to our emancipation as persons, wouldn’t have ever pursued the path of the gift and the campaign for a liberalization. It means having your neighbor at heart and waging a battle like Don Quixote, as Reg Green, Nicholas’ father, says in his own words. I know very well the battles against the windmills and I want to support in a productive way and manus legis (through the law) a modification of the 91/99 law – a law that by now is outdated/obsolete. Together we are stronger and more human, as Nicholas and his family taught us.”

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Manufacturers Fight the Virus in Unlikely Ways

The speed with which manufacturers, ranging from world’s largest corporations to boutiques, have adapted their production lines to turn out medical equipment to fight the coronavirus, has surprised laymen like me even in this most surprising of years. London-based 58 Gin, faced with the tight restrictions on bars, is using its reserves of alcohol to make hand sanitizer. Sharp, the Japanese electronics giant, is producing test kits. The Britain’s Royal Mint, instead of coins and precious metals, plans to make two million visors for medical personnel.

The Royal Mint has been producing more than 100,000 medical visors per week. (Photo by ‘The Independent’)

It reminds me that the boy who got Nicholas’ heart witnessed an even more magical adaptation. He was 15-year old Andrea Mongiardo of Rome. One of his doctors, Professor Stefano Marianeschi, now head of pediatric cardiac surgery at Niguarda hospital in Milan wrote to me to say that before the transplant Andrea was “struggling to survive, grossly under-nourished, only 27 kilos (60 lbs.) of body-weight and twice a week had to be admitted for albumin and calcium infusions.”

Happier days: Andrea, 7 years old, leader of the gang of four, with his cousins Valentina, Marta and Marco, all 5.

After the transplant and a period of recuperation, he lived a more or less normal life for 23 years. In time, he got a job and even played soccer. He told everyone he used to have a patched-up old jalopy inside him.  “Now,” he said, “I have a Ferrari.”  When he finally died in 2017, it was because of respiratory failure brought on by cancer. Nicholas’ heart, Andrea’s Ferrari, worked faithfully to the very end.

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“Most families feel better if they have contacts”

Article by Reg Green on “Il Corriere della Sera”, Health insert, June 25 2020

“Some of these relationships are among the most fulfilling I have seen anywhere. Why would we want to inhibit that?”

The complete text in English:

   Imagine opening a letter from a stranger that starts, “Your son’s heart saved my life.”

     For the first time you realize what a profound difference you made when, instead of turning inward when your own child was declared brain dead, you gave life to someone you could not even visualize. Now you have living proof that instead of that heart being buried it is likely to give a more or less normal life to someone who, going to bed at night, had never known if he would wake up in the morning.

     Much the same is true of all the other organs and tissue. It’s true, many families don’t want to contact the other side but for those who do the experience is usually electrifying. In the United States thousands and thousands of organ donor families have received letters and the institutions overseeing organ donation are unanimous in believing that in the great majority of cases the contact has improved not just the donor family’s health and happiness but those of the letter-writer’s too.

     Saying thank you is the first step for recipients being able to deal judiciously with the feeling of guilt many of them feel in being alive only because someone else has died. But then to hear from the donor family what virtually all of them think — “Please keep healthy. We want our loved one’s gift to have the best possible result” — can demolish guilt as nothing else can.

     Even more important, none of the problems opponents of change forecast — such as the psychological damage to families who don’t like each other — has ever affected more than a small number of cases.

     The letters are anonymous and carefully vetted by the families’ health advisers. If the other side does not want to reply, that is the end of it. If they do reply, their letter is anonymous too. But if all goes well, as it generally does, the families in time may write freely to each other and, if both of them want to, they can decide to meet.

     Some of these relationships are among the most fulfilling I have seen anywhere. That shouldn’t be a surprise. These families are connected in a way that leaps over all the differences that normally keep us apart: class, age, nationality, religious and political views. Why would we want to inhibit that?

Link to the article online: https://www.corriere.it/salute/20_giugno_29/famiglie-si-sentono-meglio-il-dono-non-deve-diventare-debito-957c2290-b233-11ea-b99d-35d9ea91923c.shtml?refresh_ce-cp

 

 

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From ‘Il Corriere della Sera’ (Italy): “Has the time come to modify the rule of anonymity in organ donation (in Italy)?”

From “Il Corriere della Sera”, Health insert, June 25 2020

“The Italian law forbids the communications between the two parts involved in a transplant but a public opinion movement, inspired by the father of Nicholas Green, is asking for an opening”

“A movement of opinion inspired by Reginald Green, father of Nicholas, the child killed in Italy in 1994 and whose organs were donated by his parents to save the lives of seven people, is asking again for a modification of the rule”

The campaign by Reginald Green started in 2016. Interview to the President of the Italian National Transplant Center

 

Link: https://www.corriere.it/salute/cards/trapianti-arrivato-momento-superare-l-anonimato-donazione/1994-rapina-fallita-morte-piccolo-nicholas_principale.shtml?refresh_ce-cp

 

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‘The Nicholas Effect’ 25 years later: After we donated our son’s organs, Italy was never the same (Los Angeles Times article)

Link: https://www.latimes.com/opinion/story/2019-09-27/nicholas-effect-organ-donation-italy

Article by Reg Green

Opinion: ‘The Nicholas Effect’ 25 years later: After we donated our son’s organs, Italy was never the same

Nicholas Green, 7, on vacation in Switzerland a few days before he was killed in 1994 while his family drove through Italy. (family photo)

You may remember the story of how my young son, Nicholas, was killed. Many people do.

My wife, Maggie, and I and our two children were on vacation, traveling at night on a divided highway in southern Italy when a car with two masked men pulled up alongside us. One waved a pistol and yelled at us to stop.

We got away — but not before they fired several shots. One hit 7-year-old Nicholas in the head. Mercifully, his 4-year-old sister, Eleanor, asleep beside him, was unhurt.

Later we would learn that the assailants had planned to rob us, mistaking our rented car with its Rome license plates for one delivering jewelry.

For two dreadful days Nicholas was in a coma. He was then declared brain dead. He died 25 years ago Oct. 1.

Since that day, of course, nothing has been the same. I have never again tousled his hair or heard him say, “Good night, Daddy.”

Our only solace is the decision we made to donate his organs and corneas. They went to five terminally ill Italians — some on the edge of death, four of them teenagers — and to two adults who were going blind.

Five of the recipients are still alive.

Nicholas’ heart would beat in the chest of another for 23 years. When the 15-year-old boy received it, he barely had the strength to walk across a room.

The far-reaching and long-lived consequences of our decision to donate his organs have astonished us.

In the 10 years following Nicholas’ death, the rate of organ donation in Italy tripled. No other country has come anywhere near that growth rate. The phenomenon was given a name: the Nicholas Effect.

Letters arrived from all over the world and every corner of society, from admirals and pacifists, football players and gardeners. Believers saw the hand of God and nonbelievers the power of humanity. Young children, who do not even know what a transplant is, know that a little boy did something good and they want to do something good too. The elderly are thrilled to learn they can still do something that important.

Dr. Tom Starzl, often referred to as “the father of transplantation,” wrote to say, “you and your family have done more for organ donation than anyone else I know.” People around the world were suddenly aware that if someone they loved died of a brain injury, they could save three or four families on average from devastation by choosing to give.

Almost immediately after Nicholas was killed, a town in Sicily named a prominent square after him. What an honor, we thought. But that was just the beginning. More than a hundred streets, parks, playgrounds, bicycle paths and my favorite, a bridge, are named for Nicholas. We are no longer surprised when young men and women step out of a crowd to say they went to the Nicholas Green school in that town.

Maria Pia Pedala was 19 years old and in a coma when she received his liver. She quickly regained health, married and four years later had a baby boy. She named him Nicholas. Now tall and handsome, he is fit enough in a family with a history of liver disease to have been accepted for training as a noncommissioned officer in the Italian navy.

Italian families still name their children after Nicholas, and with the American spelling instead of the traditional Nicolas. I always hope people they meet will ask them how they got their names.

We did interviews everywhere — with Oprah Winfrey, Buddhist television stations in Taiwan, radio stations in Venezuela, magazines in Poland and so on. We wrote articles that appeared in publications such as the Journal of the American Medical Association, the Times of India, Boys’ Life and major newspapers.

So that I would never forget everything that happened — and to encourage other families to donate organs — I wrote a book called “The Nicholas Effect.” It was the basis for a late 1990s made-for-television movie, “Nicholas’ Gift,” starring Jamie Lee Curtis, that has been viewed by tens of millions of people worldwide. I can’t see how anyone can watch that movie and remain indifferent to organ donation.

At the Winter World Transplant Games, an Olympic-type event open only to organ recipients, children from around the world compete in an event called the Nicholas Cup. They learn to race in a week, often with a panache that seems almost lordly given their previous conditions. It’s one more lesson that a transplant does not just prolong life but transforms it.

In almost every country, donated organs fall short of the need. Every day in the U.S., 20 people die waiting for a transplant. Yet everywhere there is a disparity between people who say they are in favor of donating and those who actually do. It’s understandable. These families are coping with sudden death — from a car accident, violence, a stroke — and must make a decision there and then about an issue they probably have never seriously thought about. For many it is just too much.

Saving lives is the most obvious result of any decision to donate. But there are less tangible benefits that testify to the strength of the human spirit. Organ donation leaps the barriers between us: The hearts of black women beat inside white women — and vice versa. Muslims are breathing through Jewish lungs — and vice versa. And, as I always like to remind audiences, some Republicans now see the world through Democratic corneas — and vice versa.

One young woman in Rome wrote to us not long after we lost Nicholas. “Since your son has died my heart is beating faster,” she said. “I now think people, common persons, can change the world. When you go to the little graveyard place, please say this to him. ‘They closed your eyes but you opened mine.’ ”

When I am missing Nicholas more than usual, I like to think of sentiments like that.

Reg Green, 90, is author of “The Nicholas Effect” and advocates for organ donation as president of the Nicholas Green Foundation.

 

The article on the Facebook page of the L.A. Times: https://www.facebook.com/5863113009/posts/10157950555128010/

 

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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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An Article from Chile: “The Nicholas Effect, A Story All People Should Know”

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August 4, 2019 · 2:14 am

The Photos That Have Marked An Era (Facebook page)

Since it was published on this Facebook page by its administrator a month ago, almost 22.000 people said they liked the story that remembered Nicholas, 700 added a comment and almost 2000 shared this story, photo and message on their Facebook pages.

Link to read all comments: https://www.facebook.com/lefotochehannosegnatounepoca/photos/a.1469940289698598/3331357836890158/?type=3&theater

Instagram link: https://www.instagram.com/p/BxuBr4LIExm/

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SKY TG24 (Italy) – Interview – Organ donation, the campaign to change the law on anonymity

(March 14, 2019)

Link: https://video.sky.it/news/cronaca/donazione-organi-la-campagna-per-togliere-obbligo-anonimato/v495448.vid

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My Daughter Got Married Thinking of Nicholas

From “OGGI” magazine – Italy – March 8 2019

“Reginald Green campaigns to change the law on transplantation in Italy. I would like that also in your Country the donor family and the recipients could meet.”

Article on the Italian magazine ‘OGGI’

 

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