Category Archives: Events

In the news: “Transplants, that gift from Nicholas’ and Rolly’s parents that saved lives” (from ‘Il Corriere della Sera’)

Author: Maria Giovanna Faiella.

Date: September 30, 2022

The stories of children, struck by a tragic fate, will be told where organ donation is almost non-existent. In Italy, 28% still oppose donations.

The story shook the conscience of Italians. Nicholas Green, the 7-year-old American boy on vacation in Italy with his family, was shot to death from a bullet on the Salerno Reggio Calabria highway, 28 years ago: thanks to his parents decision to donate his organs and corneas, five people were saved and sight was restored to two others. The gesture prompted many compatriots to follow the example of the Greens: donations, therefore transplants, increased and lives were saved.

Last April, Rolly Prajapati, a six-year-old Indian girl, was killed in a shooting: her parents also decided to donate organs. Nicholas’ and Rolly’s families have turned their personal tragedy into a generous act of solidarity with people, unknown to them, waiting for a new organ. Now, with a new campaign to increase organ donation which starts in Messina on October 1st, the hope is that the Nicholas effect will be repeated in the poorest countries in the world — but also in developed ones, including Italy, where every day someone on the waiting list dies.

Rome press conference

The speakers of the press conference

Love for Italy reciprocated

Reginald Green, Nicholas’ father, returned to Italy to support the new campaign: it will start on the same date (October 1) and in the same hospital where Nicholas died; this time the story of a little Indian girl will help tell the world that what distinguishes the life of an organ donor is not the sudden calamity that caused his death, but the new life that it has generated, and the hope of a better world that follows. Nicholas – remembers moved Reginald Green, now 93 – loved Italy and although he was only seven, we had already brought him here three times. “Since his death, Italy has repaid that love of him many times, including over a hundred places named after him. Even more, the love of Italy was revealed in a practical way: in the ten years following his death, organ donation rates tripled. Understanding the strength of that reaction is crucial to our new campaign which will be similar to the one that focused on Nicholas and which was so successful in Italy, but this time it will include Rolly. We will tell their stories in places in the world where organ donation is almost non-existent and where, every year, hundreds of thousands of people die while they could be saved by transplanting new organs if they were donated.”

Replicate the Nicholas effect

With the pandemic, donation rates have dropped around the world – explains Professor Deepak Gupta, a neurosurgeon at the All India Institute of Medical Sciences in New Delhi, who coordinated Rolly Prajapati’s organ donation. In India, where organ donations are very few and pediatric ones are almost unknown, thanks to the media attention for the story of Rolly, whose organs have saved other children, donations increased from April to August by over 60%. The hope is that the Nicholas Effect – which has driven the increase in donations in Italy – will be repeated in the poorest countries in the world but also in the areas lagging behind with donations, including some Italian regions.

There are those who still oppose it

“In Italy, at the beginning of the pandemic there was a decline in donations and transplants. Last year there was a recovery, with an increase of more than 10 percent compared to 2020, and donations also increased by 6%”, says Letizia Lombardini, medical director of the National Transplant Center. In our country too, the availability of donated organs is still lower than needed. “Last year there were over 8,000 people on the waiting list for a transplant”, Lombardini reports. In our country, the opposition rate to donations averaged 28 percent. In addition to the refusal to remove the organs made by the relatives of the deceased person, they also registered too many “no” responses to donation at the time of issue or renewal of the identity card. Dr. Lombardini reports: “In 2021, out of 5 million Italians who renewed their identity cards, 3 million expressed their willingness to donate organs, several said “no”, others still did not express themselves.”

International conference

The organ donation awareness campaign starts in Messina where the first edition of the International Conference will be held on 1 and 2 October (DONARTE 2022 – DOnation and Art: Nicholas And Rolly Testimonials.)
“Sicily is at the bottom of the national donor ranking. There are just 11 donors per million inhabitants (compared to a national average of 24), while the opposition rate (people opposing donation) is over 40 percent” – the director of the anesthesia complex operating unit of the “Martino” Polyclinic of Messina, Anna Teresa Mazzeo said. “The awareness of citizens is fundamental, which must go hand in hand with the training of health personnel”.

Originally published in “Il Corriere della Sera” newspaper. Link: https://www.corriere.it/salute/22_settembre_30/trapianti-dono-genitori-piccoli-nicholas-green-rolly-prajapati-04b36fa4-4096-11ed-8b65-55aa2f703574.shtml

This English version is adapted from: https://time.news/transplants-that-gift-from-nicholas-and-rollys-parents-that-saved-lives-time-news/

 

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Organ Donations Set a Record at India’s Biggest Hospital

    In April of this year Dr. Deepak Gupta, professor of neurosurgery at the All-India Institute of Medical Sciences (AIIMS) Delhi, coordinated the organ donation of a six-year old girl, Rolly Prajapati, who was shot while sleeping next to her parents at her home in Noida. The circumstances were close to the shooting of my own seven-year old son, Nicholas Green, while we were on a family holiday in Italy from our home in California. In the following 10 years organ donation rates in Italy tripled, a phenomenon that is known there as “the Nicholas Effect.” (nicholasgreen.org)

Donarte 2022

From left to right: Dr. Antonio David (Dean of Messina University), Dr. Deepak Gupta, Reg Green and Dr. Anna Teresa Mazzeo at Donarte Conference, Messina, October 2022

    A striking change has shown itself in India too. Since Rolly’s death, the number of organ donations at AIIMS Delhi has risen to 13, higher in those five months than for any full year since the transplant program there began in 1994. The 3,200 bed hospital usually has five to eight donations in a full year.

    The donations since Rolly’s death have yielded 43 life-saving organs and 26 tissues, such as corneas to restore sight and heart valves to cure children born with congenital heart diseases. One of the donations was from the youngest child ever transplanted in India. This rapid rise is already being talked about as “the Rolly Effect.”

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Maria Pia, Dying at 19, Is Now a Radiant 47-Year Old

She is 47, lives in Sicily and likes true stories with happy endings. That’s understandable. She was on her deathbed when she was 19.

Her name is Maria Pia Pedala and she was saved from a seemingly inevitable death by a liver transplant. When I met her a few months later she already looked full of good health. Her way back continued so well that in two years she married her loyal sweetheart, Salvatore, and four years after the transplant had a baby boy and two years after that a girl, two whole lives that would never have been.

Maria Pia Pedalà and Reg Green

Maria Pia Pedalà and Reg Green at Donarte Conference, October 2022. Photo by Andrea Scarabelli

     All this was a long time ago — she received her new liver in 1994 — but recently, back in Sicily for a few days, I chatted with her just before she gave a speech promoting organ donation at Donarte 2022, an international conference on transplantation at the University of Messina, and I could see in her the prototype of a busy matronly housewife, who gets up by 5.30 am daily, keeps the house clean and tidy, gardens, cooks and deals with all the other needs of a loving family.

She watches her health carefully, goes to bed early, eats sensibly and takes her medications meticulously, feeling she has an obligation to both the healthcare staff who have kept watch over her from her teenage to middle years and to the family who saved her life.

The result is she can do everything normal people of her age can do and in a line-up no one would pick her out as the one who had been the sickest. She also finds a preciousness in the small things in life that eludes most people.

Transplantation is a medical miracle and, even though it is an everyday procedure in hospitals all over the world, it doesn’t stop being a miracle that physicians can take a body part of someone who has died, put it into the body of someone who is dying and bring out of it a healthy person.

In this case, for my family, the story has an element in it that takes it to a higher level still: our son was her donor.

Author:  Reg Green

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From “La Stampa” Italian newspaper

“La Stampa”, a national Italian newspaper edited in Turin, just published the article “Organ Donation Group Comforts Families Who Didn’t Donate” by Reg Green, on Friday 15th.

La stampa article - July 15 2022

Article title: “Another beautiful deed after 28 years”

Link to the article in English in this blog: https://nicholaseffect.org/2022/07/01/organ-donation-group-comforts-families-who-didnt-donate/

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Organ Donation Group Comforts Families Who Didn’t Donate 

The Aido division for the Province of Alessandria (a volunteer group in the Piedmont region of Northern Italy, alessandria.provincia@aido.it) and the Alessandria hospital will soon start a new service that they have called the “Nicholas’ room” (named for ‘our’ Nicholas) to denote an environment of serenity 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 are two links to local news sources (in Italian):

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

https://www.ilpiccolo.net/generic/2022/06/08/video/nicholas-green-e-la-casa-che-da-supporto-psicologico-140764/

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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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