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Are the privacy rules on organ donation causing unnecessary grief?

Published on Giornale Italiano di Nefrologia (The Italian Journal of Nephrology)

Link: http://giornaleitalianodinefrologia.it/en/2017/07/18/la-privacy-sulla-donazione-di-organi-causa-inutile-dolore-alle-famiglie/

A few weeks ago I received an email from a family in England, complete strangers, which said, “Our 21-year old son, Jack, was run down and killed crossing a road in Sicily in 2009”. Despite the nightmare of this happening so far away, his parents, David and Debbie Marteau, donated his organs. Jack’s heart was sent to Rome and his kidneys and liver went to three people in Sicily.

And after eight years of wondering what happened, that is just about all they know. They have no idea if the recipients are young or old, male or female, or if all or none of them are still alive.

Their anguish and frustration are palpable. “We have always held a wish to make some connection with them or at least to know how they are doing,” David added. He and his wife have written to the two hospitals that performed the transplants but have had no reply. They asked me to try to find out whatever I could, anything. “We are out of ideas,” they said wearily.

They contacted me because my wife, Maggie, and I, who live in California, donated the organs of our seven-year old son, Nicholas, in Italy after he was shot in an attempted carjacking while we were on a family vacation there in 1994.

In our case, however, this being an event that captured Italy’s imagination, the identity of the seven recipients was known almost immediately.

Four months after the transplants we went back to Italy to meet them en masse at an event organized by the Bonino-Pulejo Foundation, the cultural foundation based in Messina, Sicily, where Nicholas died. Only the heart recipient was not there, still recovering from a condition that before the transplant was so serious he could scarcely walk to the door of his apartment.

Watched by hundreds of people in a packed hall and millions on television round the world, they came in with their families, a small army of people, some smiling, some tearful, some shy, some ebullient, but all looking vibrant and healthy.

Four months earlier they were phantoms. “Did one little body do all this?” I said to myself. Since then we have met them all again once or twice and one of them several times.

Twenty-three years later five of the seven are still alive and even the teenagers are approaching middle age. In that time organ donation rates in Italy have tripled, a rate of increase no other country has come close to. Although in any growth of such magnitude there are many causes, it is known as “The Nicholas Effect” and those front-page stories and television interviews, showing us with the robust survivors were a crucial part of it.

But in 1999, five years after Nicholas was killed, a new law was enacted to protect patients’ privacy that forbids healthcare personnel from disclosing information about either donors or recipients. In all normal circumstances the two sides know nothing about each other. Differing restrictions are in force in countries around the world (1).

Clearly, there are weighty reasons for the two sides not to have contact, such as the fear that one party may make unreasonable emotional demands on the other, worries about the effect on the donor family if the donation fails and even the possibility that the donor families will ask for money.

How real these risks are in practice I don’t know. American experience, where the rules are different, suggests they are greatly exaggerated. But against those risks are their opposites: that knowing nothing can cause considerable pain. I know that pain is real – or, in its milder form, a sense of something unfinished — because both donor families and recipients around the world have told me so. Given that organ donation is the most altruistic of all health decisions, and that all donor families are going through the ordeal of adjusting to a life that has lost an essential ingredient, that seems grossly unfair.

The meetings we have had with our own recipients have been therapeutic for both parties. On our side, we have living, smiling proof that a simple decision brought five people back from the shadow of death into more or less normal lives and gave back sight to two others.

We have never thought that Nicholas lives on in them in any meaningful way. “Those are their organs now, not his,” I remember Maggie saying to a newspaper reporter immediately after the transplant.

But talking with them or hearing stories about them or reading emails from them is a reminder that the life of our small boy, whom we all thought would do something important, was not wasted. You can imagine what a consolation that is.

For the recipients too, knowing us has been a tonic. They have seen for themselves that we do not begrudge them a happiness they gained only because Nicholas died. Better still, they know they can give us no better gift in return than to remain healthy and happy. Thus they have been spared the vague sense of guilt that clings to many organ recipients.

When I was in Italy a few months ago for a television interview with Nicholas’ liver recipient, Maria Pia Pedala, I decided to ask her something I have always kept away from. “Have you ever felt upset about the transplant?” I mumbled, fearing I was stepping on dangerous ground.

Her answer was direct and forceful. “At first, it upset me that I was alive because a little boy had died,” she said. It was a classic response. “But then Maggie told me: ‘If his liver had not gone to you, it would have gone to someone else.’” That lifted the burden, she said. Instead she thinks of Nicholas as an angel guarding the family, including her son who was born four years after the transplant and whom she named – yes – Nicholas.

Unlike us, the Marteau family is caught in a well-intentioned web of privacy protection, even though the circumstances of our donations are quite similar. There may be a way of finding the basic information they are looking for but if so no one has explained it to them and so far every avenue they and I have tried is closed.

Conditions differ markedly between different countries and what fits one would not work in another. However, in the United States the general rule is that the two sides can meet if both want to and if the health care organizations looking after them have no objection. The system appears to work well for all parties. There are no national statistics but plenty of anecdotal evidence. Any reader who wants to know more should contact the Association of Organ Procurement Organizations (www.aopo.org)

Rob Linderer, chief executive officer of Midwest Transplant Network, the government-designated organ procurement organization that oversees organ donation in the state of Kansas and a part of Missouri, says in 38 years he can recall only two interactions of recipient and donor families in his area when there were problems. One, more than thirty years ago, was the mother of a heart donor who became obsessed with the recipient and who was told gently but firmly she had to break off the contact.

In fact, for Linderer the biggest challenge in the early years was the one-year waiting period MidWest had as part of its policy. “Many recipients and donor families felt it was an unreasonable hurdle,” he says. “We revised our policy and now do not have time frames if both parties agree to communicate sooner.”

OneLegacy, the organ procurement organization for Los Angeles and most of Southern California, and one of the biggest in the United States, says that for its area too problems when the two sides contact each other are “rare” adding that “in the large majority of cases the outcomes are very positive.”

These interactions are quite numerous. Gift of Life Donor Program, another of the largest organ procurement organizations, receives three or four letters a day from one side wanting to contact the other side. Most are from recipients who want to express their gratitude to their donor family. They struggle to find their own way of saying “words are inadequate to thank you” but the urgent desire to find those words is clear in every one of them. Many add, “I think of my donor every day.” All this is balm for donor families.

All those who deal with these relationships have also seen cases of “secondary loss” where, when a recipient dies, the donor families re-live their own loss. It is a risk anyone who wants to start a relationship has to be aware of. The alternative, of course, is a lifetime of doubt, as the Marteau family is experiencing. In our case I can say that, when two of Nicholas’ recipients died, we never felt we were losing him again, only that we were losing two brave people with whom we felt a special bond.

Even then, hearing from families how much their loved ones achieved in those extra years is a priceless consolation. When Nicholas’ heart recipient, Andrea, died a few months ago, 23 years after the transplant, one of his cousins suggested we meet on my next visit to Italy. There, in a conversation that was a delight and comfort to both of us, she told me how he called his new heart a Ferrari, compared to the old patched-up jalopy he had before. It’s a story I will smile at until my dying day.

When these contacts lead to face-to-face meetings, the risks are higher – though both sides will have been thoroughly screened by the health teams before that takes place. But the rewards also can reach an entirely level. Recently, one of them took place in Los Angeles in public. It was electrifying. The story traces back to 1997 when Inger Jessen, then 55, received a new heart. She did what considerate organ recipients do, she wrote a letter thanking her anonymous donor family and sent it to her organ procurement organization, OneLegacy. Without revealing Inger’s name, they passed it on to the parents of the donor, 18-year old Nicole Mason, who had been hit by a small pickup truck as she was walking on a road near her home.

There was no reply. “I understood,” Inger said. “My son died from a heart attack when he was 30.”

Still, she was troubled. Before the transplant she couldn’t walk to her car without help and she wanted to visualize the people who had saved her life. She didn’t know their ages, what they did for a living or why they donated.

So when, two years later, she won two gold medals for swimming in the World Transplant Games — Olympic-type events for organ recipients — she sent a card to OneLegacy, to be passed on anonymously to the donor family, still knowing nothing about them but hoping it would give them some comfort to know the huge change their gift had made to her life. Again she did not hear back.

Meanwhile, Dan and Shirley Mason in Big Bear Lake, California were still numb from the loss of their lovely high-spirited daughter. “I had no feeling for anything. I had a four-year old grand-daughter and I couldn’t even play with her,” Dan remembers.

“Sometimes when I was driving I had to pull over to the side of the road to sob.”

Twenty years passed until out of the blue Inger, now 75, got a call from OneLegacy. The Masons wanted to meet her! For a moment she thought it was a mistake, a call for someone else, perhaps, that had gone astray. For days she went around in a dream.

“We were ready at last,” Dan explains. “We had seen how much good we could do by speaking out. It seemed so selfish not to open up.” Their grief is still evident in everything they do. “I don’t want to forget a thing about Nikki,” he says.

But having decided to meet Inger they wanted to have the maximum impact on organ donation and on May 15, 2017, 20 years to the day after their daughter’s death, they agreed to meet in front of a battery of television cameras.

“We spent a nervous night before the meeting,” Dan says. So did Inger, who has had more than her share of troubles: she still has three children but her husband is dead and one of her legs was amputated because of diabetes.

But when she and the Masons met, they fell into each other’s arms. “They were so loving,” Inger says. “She was so caring,” says Dan.

It was a heart-rending occasion for everyone, the climax coming when the Masons listened by stethoscope to the strong, regular beat of their daughter’s heart, which has worked perfectly from the start (2)(fig 1). OneLegacy made a three-minute video of the Masons meeting Inger Jessen.

The link to it is  https://www.youtube.com/watch?v=DgCLEkjS7sk.

But through the tears shone the joy. “I couldn’t believe I was listening to Nikki’s heart,” Dan recalls with awe. “I think of her every day. She seems so far away. But here she was again.”

For Inger too the meeting had a profound effect. “Since then,” she said, “I have felt a peace I haven’t known in years.”

Reg Green (www.nicholasgreen.org)

 

AFTERWORD:

I have written this paper, with the encouragement of Professor Natale De Santo, nephrologist and professor emeritus at the University of Campania to stimulate discussion on the way the 1999 law works in practice. As a foreigner, I am very much aware that I have no grounds for drawing conclusions. I have simply laid out my experience so others can decide.

References

  1. Italian Regulation of Organ and Tissue Transplants Law 91, 1° april 1999, available at this link: http://trapianti.net/en/regulation/
  2.  OneLegacy made a three-minute video of the Masons meeting Inger Jessen. The link to it is https://www.youtube.com/watch?v=DgCLEkjS7sk.

ITALIAN VERSION:

(La Privacy sulla Donazione degli Organi sta causando un inutile dolore alle famiglie?)

Link all’edizione in Italiano:

http://giornaleitalianodinefrologia.it/2017/07/18/la-privacy-sulla-donazione-di-organi-causa-inutile-dolore-alle-famiglie/

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His Heart Saved the Life of His Baseball Idol

When baseball legend Rod Carew visited Konrad Reuland’s middle school to watch a basketball game, the teenager could talk of nothing else to his family that night. Fifteen years later Konrad’s heart saved Rod’s life.

By then Konrad had become a public figure too, an NFL tight end — he had played for the New York Jets and the Baltimore Ravens — and by all accounts was in the best shape of his life. But, like so many other healthy people, he was hit without warning by an aneurysm in December when he was 29 and, despite a 17-hour operation, became brain dead. His parents donated his organs, saving the lives of some very sick people, all unknown to them.

One, it turned out, was Rod Carew, who had developed heart failure after a massive heart attack in 2015, and it was Konrad’s mother, Mary, who figured it out after friends wondered aloud if he could have been Carew’s donor.

All she knew was that the heart came from a 29-year old who lived in Southern California but it was enough for her to ask question after question until she found out what she could scarcely believe: that part of her son was keeping alive a man he had idolized. Carew, now 71, was an icon to millions: the Hall of Fame Minneapolis Twins first baseman who was a seven-time American League batting champion and who stole more bases in one season than anyone in history except Ty Cobb.

At the time of Konrad’s death, however, he was a man struggling to stay alive, the only possible cure being a donated heart. Given the severity of his condition, the need for the new heart to be compatible with his own and the chronic scarcity of families willing to donate the heart of a loved one who has just died, the chances were dauntingly small.

But there is always a trickle of families like the Reulands and Rod has recovered strongly in both body and spirits. I met him at one of the press conferences that in recent days the two families have held jointly to promote good heart health and draw attention to the power of every organ donation to transform the world for multiple people.  Asked whether having a heart that belonged to someone else gave him any physical problems he said simply, “No. I never think about it.”

At this press conference, held appropriately at the Little League stadium in Encino, California, I asked the two sides if meeting each other was beneficial. Neither hesitated. “Absolutely,” said Mary and Rhonda, Rod’s wife, added, “We feel we have known each other all our lives.” The Carews are profoundly grateful to the Reulands and the Reulands are comforted that Konrad’s decision to say ‘yes’ to organ donation, when he renewed his driver’s license a few months earlier, has saved the life of such a revered man.

More broadly, just as donating an organ gives solace to almost everyone who does it, Mary commented, “Knowing a piece of my baby is still down here on earth is a great comfort.” I had to fight back the tears. To call a 6-foot-6, 270-pound football player a baby in public takes boundless love and almost unbearable pain.

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Emotional Upsurge for Italian Earthquake Victims has one Precedent: Death of a Small American Boy

The recent devastating earthquake in Italy caused an enormous increase in blood donations. Searching for a parallel, the highly-respected health writer, Margherita De Bac, could only find one: an organ donation story. Here is an excerpt from her article in Italy’s largest newspaper, Corriere della Sera.

Earthquake, the Amatrice Effect, thousands of blood donors.

“The emotion after the earthquake brought a huge number of volunteers to the blood transfusion centers. Now the people in charge of such donations hope that the solidarity does not end. It has been called ‘The Amatrice Effect’. Thousands of blood units were donated by citizens to help the victims of the shock that crumbled towns between Lazio, Abruzzo, Umbria and Marche regions. There has never been such an immediate and spontaneous response [from blood donors.] The same thing happened in 1994, when the death of Nicholas Green, the American child killed along the Salerno-Reggio Calabria highway when he was traveling with his parents, moved the consciences of the Italian people about the problem of transplants…….. Sometimes emotion is worth one thousand campaigns of awareness.”

[After Nicholas’ organs were donated, donations in Italy increased every year for the next 10 years, until they were three times as high as before he was killed.]

Link to the article: http://www.corriere.it/salute/16_agosto_29/terremoto-effetto-amatrice-d5eae0fc-6e06-11e6-8bf4-ee6b05dcd2d0.shtml

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When the Lights Are Turned Off

      In “The Gift that Heals” (www.authorhouse.com) Mindy Zoll, then a transplant coordinator with TransLife, the organ procurement organization in central Florida, described the operating room — at one time crowded and noisy with perhaps 15 or 20 people in it — as the removal of a donor’s organs comes to an end. “The first surgeon will take the heart and he’s gone, already on the roof and into the helicopter or in an ambulance, with the lights and sirens going, while the others are still working. One by one each team leaves and, in the end, it’s just two or three people cleaning up, and everything is quiet again,” she said.

“I generally help put the patient in a shroud before they are taken to the morgue and I always thank them for what they gave. I think of their family at home, in a house that suddenly seems empty, and I want them to feel that I cared for their loved one, just like I would my own.”  

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Fifteen-Year Old, Weighing 60 lb., Now Has My Son’s Heart

A few months ago I received a letter from a transplant surgeon who helped put my dead son’s heart into the body of a boy who would have died without it . He is Dr. Stefano Marianeschi, now Director of the Pediatric Surgery Unit at Niguarda Ca’ Granda hospital in Milan, one of Italy’s foremost transplant hospitals. “We have never met in person but our lives crossed in 1994,” he wrote.

At the time, Dr. Marianeschi was a young cardiac surgery assistant at Rome’s famous children’s hospital, the Bambino Gesu (Baby Jesus) where one of his patients was “a bright boy” named Andrea, 15 years old, who suffered from a complex congenital disease of the heart for which he had already had three major operations, none of which had cured him. This time the diagnosis was terminal complications from the third operation, namely protein-losing enteropathy.

“When I met him he was struggling to survive, he was grossly undernourished, weighing only 27 kilos (60 lb.)and twice a week he had to be admitted to our hospital for albumin and calcium infusions. The only hope for him to get back to a normal life was a heart transplant.”

In those days organ donations in Italy were just about the lowest in Western Europe. “People were resistant to the idea of consenting to donate the organs of their loved ones. So every heart transplant brought challenges and great emotions at the same time,” Dr. Marianeschi wrote.

“I clearly remember the night of October 2. Andrea was in our ward and suddenly we were called because there was finally a heart for him. Dr Antonio Amodeo flew to Sicily to harvest the heart. I went to the hospital and gathered with all the surgeons assisting Professor Carlo Marcelletti to perform the transplant.

 “Initially I did not know who the donor was. I was just happy for my patient to receive the transplant. But as I realized that it was Nicholas’ tragic loss that was the light at the end of a very dark tunnel it was with mixed emotions that we proceeded, trying to make the best of a bad situation. The operation went well and Andrea gradually recovered. Now he is 35 and we meet sometimes on the social media on the Internet. He is still bright like when  he was a child.”

Just another medical miracle.

I remember that night too and the numbness that came with having made a decision that meant we had given up any last hope of holding on to Nicholas. But it never entered my mind, nor Maggie’s either, that this was anything other than the overwhelmingly right thing to do. And that is as true now as it was then.

P.S. I should add that the letter was mailed from Cambodia, where Dr. Marianeschi and other doctors from Niguarda hospital work several weeks of the year to make a dent in the huge backlog of medical problems in a country where a whole generation of physicians was blighted by civil war and repressive regimes and where even now medical resources are woefully inadequate.

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Child Killed at Random Gives Sight to Others

Roxanna Green is the mother of Christina-Taylor Green, the 9-year-old girl who was killed when a gunman fired into the crowd at an outdoor meeting for Congresswoman Gabrielle Giffords in Tucson in 2011. She remembers, as in a nightmare, her daughter covered with a sheet and she, beside her, kissing her face and stroking her feet, willing her to live.

But, even as she and her husband, John, grappled with the enormity of their loss, they found the strength to donate her corneas, restoring the sight of two people, for whom there was no other cure. The child, born on one day of indiscriminate killing, September 11, 2001 – ‘9/11’ – and dying on another, gave the nation a reason to believe that, even in the most heart-wrenching circumstances, selflessness can overcome senselessness.

Christina Taylor Green with Roxanna

Shot at random: Christina-Taylor Green with her mother, Roxanna.

(Courtesy: the Green family)

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The Seven-Year Old Policeman

Six-year old Noah Michael Davis of Shawnee, Kansas. wanted to be a policeman so he could make sure “everyone was safe.” He didn’t make it. Instead, he drowned in the family swimming pool and was declared brain dead. Although he couldn’t help everyone, his family did donate his kidneys, giving two very sick people their lives back. On what would have been his seventh birthday, he was sworn in as an honorary police officer.

noah - the 7-year-old policeman

Noah Davis, Honorary Police Officer

(Courtesy: the Davis family)

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Cora’s last smile

Cora Hill of Orlando, Florida, 22 years old, dying from cystic fibrosis and, having received a new pair lungs that in time failed, in chronic pain and too weak for another transplant, came to a decision: calmly, but definitively, she told her family she wanted to be taken off life support and donate her kidneys.

Cora Hill - hospital

In this photo, courtesy of the Hill family, she is holding the baby of a friend. Two days later, her ventilator was switched off and the lives of two very sick people were transformed. Her mother, Dee (who is in the photo) says it was Cora’s last smile.

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Map of places named for Nicholas in Italy (Mappa dei luoghi intitolati a Nicholas in Italia)

Within days of Nicholas being killed, Italian communities of all sizes, from some of the largest cities to small villages began to talk about naming places for him. Twenty-one years later, 110 have been identified: streets, schools, parks, squares, and one bridge, all over Italy. Please click on any tab for more information.

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Donated organs go to people in the greatest need so they are usually very sick, sometimes within hours of death. What happens to them?

When all goes well with a transplant operation patients who couldn’t walk across the room without having to stop for breath are out of the hospital in a few days after their transplant, back at work soon after, playing sports again. Athletes return to compete, including the Olympics, NBA championships and marathons.
Generally, their whole life changes. They become rejuvenated, take up pursuits they have never had the energy for, have babies that were previously not even a possibility, climb mountains, get degrees and travel to faraway places. They relish even the most mundane routines – shopping, driving the car to work, being alone without worrying about a catastrophe.
They come from all walks of life, all temperaments and all philosophies. Some are deeply religious, seeing the hand of God in their own experience; some are intermittent worshippers, some firm non-believers – in fact, a cross-section of society.
A common thread, however, brings them all together: gratitude: they have their donor’s photo in their wallet, send flowers to the family on birthdays, light candles and determine to be worthy of the gift they received. The other people in this inspiring equation are the ones who saved them. The great majority of donors never met the recipient and never will. They died and, in dying, their families, often acting on what their loved one had told them, agreed to make their gift without any knowledge of where it would go.

What kind of people are donors?

Donor families are as diverse as recipients. Some had scarcely heard of transplantation until suddenly faced with the death of one of their members. Others had talked about it freely. Some came to the decision agonizingly. For others it was so obvious they didn’t even debate it. But all, at the moment when they were most vulnerable, instead of turning inward in bitterness and despair, set aside their grief long enough to help people they could only dimly imagine.
Some donors didn’t die. Nowadays, one in five are living donors, who undergo a major and otherwise completely unnecessary operation, to give a kidney or part of their liver or lungs, to help someone in need. Mostly that someone is a close relative and they regard the donation as a privilege. But at times it is a casual acquaintance or even a total stranger. When asked why they would put themselves at risk they typically shrug and say simply: “They needed it more than I did.”
Despite all these differences, the power of transplantation has produced a strikingly uniform response among donor families. Among all the hundreds of donor families I have met, I can scarcely remember one who regretted the decision. Almost all say it was the one good thing to come out of a terrible time.
It is those who didn’t donate who often have regrets. At meetings about organ donation people will come up, with tears in their eyes, to say, “I wish I’d done that.” Five, ten, sometimes twenty years earlier a family member had suffered brain death. No one approached them about donating or they were too upset to think about it or at the time the idea frightened them. Now they feel that somehow they let that loved one down.
Not that donation takes away the loneliness. More often than I like to remember, I will meet a young couple who say quietly something like this: “A few months ago our daughter’s school had a presentation on transplantation. She told us that if anything happened to her she’d want to be a donor.”
They pause to pluck up courage and my heart sinks, knowing what is coming. “A few weeks later,” they add, “she was killed coming home from school on her bicycle. We didn’t hesitate.”
People like that speak of the peace of mind the decision has brought them and the way it has helped them heal. “It’s given a meaning to her death,” they say. “It produced something good instead of everything being a waste.”

If you want to be an organ and tissue donor, you must tell your family. Here’s why:

In the absence of any previous discussion, a family in the waiting room of a trauma hospital is often bewildered. The circumstances of sudden death are always searing but, in addition, family opinion may be divided, some members who need to be consulted may be away, emotions can be running out of control. Misconceptions are commonplace. Some people are convinced that if they sign a donor card the doctors will not try as hard to save them. Some think their church is against transplantation. Others say of someone who has just died, “I don’t want her to be hurt anymore.”
Everything is working against calm thought. A mother may have to call her husband at work to tell him their child was hit by a car. A father may have to tell his children their mother is not coming home.
Making a major, irrevocable decision there and then about something they have never seriously thought about is too much for many people. They say ‘no’ and often regret it for the rest of their lives.

Do you know why the need for donated organs is so urgent?

The need is urgent because the potential supply is so limited. In the great majority of deaths, where the heart stops beating, the organs deteriorate too quickly to be transplanted. Most donated organs come
from the small number of people, whose brain has stopped working and are truly dead, but who are on a ventilator that can keep their organs viable for a short time. By contrast, almost anyone can donate tissue – corneas to restore sight, skin to cure burns, bone to straighten spines, ligaments so that invalids can walk again. A donation produces on average three or four organs, saving three or four families from devastation, in addition to tissue that can help up to 50 people. Most people in their whole lives will never again have as great an opportunity to change the world for the better as they have at that moment. With that much on the line, I often wonder what possible debate there can be about what is the right thing to do.
Material on this blog often comes from Reg Green’s published articles and books.
This preface is from “The Gift that Heals” (www.authorhouse.com)

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