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If I have a transplant, will I be able to drive? dying boy asks

When Andrea Mongiardo, an Italian boy, 15 years old but stunted by chronic illness to 4ft. 4 in,  was told only a new heart could save his life, he asked his doctor a boy’s question: after the transplant would he grow to 4ft. 9 in, the minimum height for a driver’s license?

“I can’t guarantee that,” the doctor replied, “but I am absolutely convinced that a transplant is the necessary condition to be able to do it.” That did it and the transplant went ahead, successfully.

     The story has a special interest for me because the new heart had belonged to my seven-year-old son, Nicholas, who had  just been shot in a botched robbery while we were on a family vacation in Italy.

     The doctor is Dr. Francesco Parisi, formerly director of the Thoracic Transplant Unit at Bambino Gesù hospital in Rome, who has just written an absorbing book about his career, mostly by recalling some of his most interesting patients. One of the chapters is about Andrea and Nicholas. The book is called I Have Seen People Who Have Crossed the Andes to emphasize how the most difficult problems can be overcome.

ho_visto_persone_attraversare_le_ande

Before the transplant Andrea was on the very edge of death. Born with a congenital heart disease that three operations had failed to cure, he was grossly under-nourished and was receiving infusions of blood products twice or three times a week. He also developed a serious stomach disease.

     The transplant went well, however, and in time Andrea finished school, got a job, grew to 5ft 2in — and got his driver’s license. For many years he lived productively but then, weakened by all those years of bad health and the many treatments he endured, he died in February 2017, 23 years after his transplant. The official cause of death was respiratory failure, Dr. Parisi told me. “Nicholas’ heart went on beating to the end,” he added.

For my wife, Maggie, and me, close to the Mongiardo family as we became, this was of course a very sad ending but like them we were consoled that he had died on the threshold of middle age and not as a teenager.

So far the book is available only in Italian. It is titled “Ho Visto Persone Attraversare Le Ande”.

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Jamie Lee Curtis talks of “Nicholas’ Gift” on her Instagram page (January 13 2022)

Jamie Lee Curtis, who played my wife, Maggie, in an almost forgotten  television movie about organ donation, once told me she was as proud of her performance in it as she was of anything else in her career. This week on her Instagram page she said the subject was  “haunting, honoring and humbling.”

JLC Instagram January 2022 V4

The movie is Nicholas’ Gift, a true story, and in it she plays the mother of our seven-year old son, Nicholas, whose organs and corneas we donated after he was shot in an attempted robbery during a family vacation in Italy in 1994.  I don’t see how anyone could watch it and remain indifferent to organ donation.

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The seven recipients two years after their transplant with the Greens and their three children. Left to right standing: Reg and Maggie Green; Andrea Mongiardo (heart); Francesco Mondello (cornea); Tino Motta (kidney); Anna Maria di Ceglie (kidney); Eleanor Green. Sitting: Laura Green, Maria Pia Pedala (liver), Domenica Galletta (cornea), Silvia Ciampi (pancreas cells), Martin Green. Photo included here by permission of Oggi magazine, Italy

Given that she has starred in a variety of blockbuster movies in the last forty years and amassed a string of awards — most recently the top Lifetime Achievement Award at the Venice Film Festival in September 2021 — her assessment is an extraordinary comment on a movie that is rarely-mentioned nowadays in the United States, although it has been seen by 100 million viewers worldwide.

Reg Green

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The first-grade classroom of a new school is named for Nicholas

The first-grade classroom in a new primary school for gifted children in Catania, Sicily, has been named for Nicholas. The John Dewey Institute, which emphasizes linguistics and international studies, features his story as an example of creative ties between countries. 

John Dewey Institute

The principal, Professor Giuseppe Adernò, a tireless spokesman for organ donation, says “When the organs and corneas of this little American boy went to seven Italians it changed the entire attitude of the country to organ donation.”

Catania John Dewey Institute - classroom

Four of Nicholas’ seven recipients are Sicilian: the liver recipient who had a son after the transplant whom she named Nicholas; a kidney recipient, who was only 10 when he was transplanted; and two adults who were saved from blindness.  

Professor Adernò was the principal of another school when Nicholas was killed 27 years ago. In the hallway of that school there were two clocks: one on Italian time, the other on California time, where Nicholas had lived, to remind the students every day that anyone, however small, could help others at any time.  

 

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New edition of “The Nicholas Effect”

A new low-priced edition of The Nicholas Effect, the book I wrote of how the shooting of a young boy saved thousands of lives, has just been issued.

“I can think of no book that surpasses The Nicholas Effect in opening the heart,” Bud Gardner, editor of Chicken Soup for the Writer’s Soul, said of it. The book was the basis for the Jamie Lee Curtis made-for-television movie, “Nicholas’ Gift.

Book cover

It includes chapters on how Nicholas was shot and what life is like for our family without him, the trial of his killers, the making of the movie and the extraordinary response to his death around the world. The book can be bought on all the usual online sites. For Amazon, you may click here

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Data: ‘Italian organ donations 1992-2020’

On October 1 it will be 27 years since Nicholas died and became a donor. The effect on organ donations in Italy was spectacular. Even in the fourth quarter of 1994, just weeks after he was killed, donation rates went up 20 percent. In the next ten years they tripled, a rate of increase no other country has even come close to. 

Organ donations in Italy over the years - SIT report

Source: “Annual Report on Italian Organ Donation, to December 31 2020; Transplant Information System, Italian National Transplant Center”

(Light green is living donations of kidneys, orange is living donations of a portion of livers.)

The full report (in Italian) is at  https://trapianti.sanita.it/statistiche/attivita/2020_D_ATTIVITA_ORGANI_DX-TX.pdf

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Jamie Lee Curtis, who just received the Golden Lion Life Achievement Award at the Venice Film Festival on September 8, was once my wife!

     The first words Jamie Lee Curtis said to Maggie Green, the mother of Nicholas Green, the seven-year old California boy who was shot while on a family vacation in Italy, and whom she was going to play in a made-for-television movie, were: “I hope I won’t  let you down, Maggie.”

      I can’t think of any other superstar who would have had the unpretentiousness and sense of involvement to say anything like that. As the mother of two adopted children, Nicholas’ death was a knife in her own heart. Yet she was able to discipline her anguish into a performance that earned her a nomination for an Emmy.

movie GreensOnLocation

     The movie, “Nicholas’ Gift,” was based on our decision to donate our son’s organs and corneas to seven very sick Italians, four of them teenagers.

     Awareness of the loss of life due to the shortage of donated organs increased all over the world as millions of people understood for the first time that a simple ‘yes’ could save multiple families from devastation. In Italy alone donations tripled in the next ten years, a rate of increase no other country has come close to,

     The movie was made in 1998, four years after Nicholas was killed. It has been seen by around a hundred million people, including forty million in the United States. Les Moonves, then CEO of CBS, said it was the network’s ‘crown jewel.’ In the movie, I am played by Alan Bates.

     A few days ago Jamie told me she is as proud of her performance in that role as anything else in her career. Deservedly. I don’t think anyone watching her working her way from the horror of the shooting to the quiet determination to save the lives of total strangers could remain indifferent to its message of selflessness. It was just how Maggie dealt with it in real life.

JLC VENICE FILM FESTIVAL

    On a street in Rome two or three years after the movie was made, a stranger came up to me and told me he was an extra in it. “We were all  expecting a bigshot Hollywood star but every day she ate in the canteen with the rest of the cast.”

     The genuine article? You bet.

P.S. Jamie, We were married for only ninety minutes but they were some of the most consequential in my life!

Reg Green

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Canada’s “Most Tenacious Donor Advocate”

George Marcello, Canada’s most tenacious advocate for organ donation, has died aged 65, after a long illness made worse by his refusal to slow his relentless campaign to raise awareness of the worldwide shortage of donated organs. In the 27 years that I have been traveling the world for the same cause, I have never met anyone who gave more of himself to organ donation. Working mostly alone, he took up the cause when his own life was saved in 1997 by a donated liver. He walked thousands of miles across  Canada carrying a torch — the Torch of Life, he called it — attracting a following in whatever community, large and small, he walked through. One of those who wanted to know more was Pope John Paul II who blessed the torch when he gave an audience to George in Rome in 2001. 

George Marcello

                             (Photo by ‘Step by Step Organ Transplant Association’)

Among his many initiatives was bringing together the family of Palestinans, whose son was shot by mistake by an Israeli soldier and whose organs went to Israeli children, and the mother of a British Jew who was blown up by a Palestinian terrorist, one of whose kidneys went to a Palestinian. I don’t know anyone else who would have thought of that powerful lesson for humanity and had the iron determination to make it happen.

For more please see https://www.canadahelps.org/en/charities/step-by-step-organ-transplant-association/ 

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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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“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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