Restoring Humanity to Downs Children (Part 2)

Author Clara Lejeune-Gaymard on Curing Down Syndrome

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By Carrie Gress

WASHINGTON, D.C. MAY 27, 2011 ( If a fraction of the money spent to diagnose and kill children with Down syndrome were used for research, we would already have a cure, says French author Clara Lejeune-Gaymard.

In this interview with ZENIT, Lejeune-Gaymard, author of «Life is a Blessing: A Biography of Jerome Lejeune,» speaks on her book about her father, the French scientist who discovered the source of Down syndrome, recently republished in English by The National Catholic Bioethics Center.

Part 1 of this interview was published Thursday.

ZENIT: Many researchers keep a distance from those whose life their work affects. Your father seemed to take a different approach. What was his relationship like with his patients and their parents?

Lejeune-Gaymard: When he became a doctor, his first job was in a hospital and he saw a child with Down syndrome.

There he really decided that he wanted to find out why they had a special face, and so on. I would say it was really his vocation. He really believed that he wanted to find a way to treat them and he dedicated his research to that.

He made this discovery because he loved those children and their families and he wanted to help them.

It was not because he made the discovery that he took care of children with Down syndrome, but it was because he wanted to take care of the children with Down syndrome that he made the discovery. And that explains all his relationship with them.

ZENIT: After his death your family established a foundation to carry on his work, especially to find a cure for Down syndrome. What does the foundation do and where does it operate?

Lejeune-Gaymard: My father wanted to create a foundation when he was alive because he knew that he would have to retire and he wanted to continue his research. At the beginning it was his project.

The day before he died I went to visit him and he said that he was very sad for his patients because they would not understand why he had to leave them. He said: «I am abandoning them and they won’t understand why I am not with them anymore.»

I said: «They will understand. They understand better than we do.»

And he said: «No, they don’t understand better, but they understand deeper.» And with that, when he died we really thought that we would have to do something for them.

After a year and half we started a foundation dedicated to the research and treatment not just of Down syndrome, but of all the syndromes of intellectual diseases caused by genetic codes.

We have created a center in France for genetic research and we have a committee that distributes subsidies to different teams around the world.

We have already funded 60 projects by 32 teams in the United States, and we are in the process of starting a foundation in the United States for more research and treatment.

The real treatment that doesn’t exist today that researchers are working on is to silence the genetic problem. The patrimony of children with Down syndrome is OK, but it just repeats, like a skipping record.

My father was always saying that a child with Down syndrome is more child than the other; it is like he is not completely finished. So if the gene could be silenced then the child could be normal.

And this is really the future of medicine, to repair the genetic code. So it is not crazy to think that one day we could treat them.

The difficulty is that there is a lot of money to make the diagnosis and to kill them, and if we could put only 10% of that money into research, we would have already found the cure.

ZENIT: Your father was a friend of Pope John Paul II, having served for many years as a member of the Pontifical Academy of Sciences and as the first president of the Pontifical Academy for Life. What was their relationship like?

Lejeune-Gaymard: He wouldn’t say that he was a close friend of the Pope, but it was a reality.

The way it started was that he was elected to the Pontifical Academy of Sciences by Paul VI, not by John Paul II. But when John Paul II became Pope, he asked my father to come because he wanted to have an understanding of everything about cloning, research on embryos, etc.

So they had breakfast together and from then on he would call my father whenever he needed particular explanations. They would have lunch together about every six months.

In 1981, the 13th of May, he was there for lunch with the Pope with my mother. Afterward, they took a taxi to the airport, took a plane home and when they landed they heard that the Pope was between life and death because he had been shot. They were the last ones to have met him before he went into the square.

My father, that afternoon, experienced unexplained strong pain, such that he had to be hospitalized and for three days. He experienced similar pains as the Pope and a fever from what turned out to be kidney stones.

He never liked to talk about the connection between his illness and the Pope’s, but there was truly a connection.

Just before my father died he received a telegraph from the Pope saying he hoped he was in better health and so on. And when he died on Easter Sunday we called and told the Pope that my father had died.

We had a very good friend, the former Minister of Justice in France, who called us that day because he saw on TV the benediction of the Pope and noticed that the Pope looked so sad. He said, «I guess that Jerome is dead.»

When John Paul II came back to France in 1997, he decided to visit and pray at my father’s grave.

For that event, with so many guards and security, we were allowed to only have our family.

I had to negotiate to be allowed to have handicapped people present as my father would not understand that the Pope would come without allowing his other children, the handicapped people, to be there too.

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On ZENIT’s Web page:

Part 1:

On the Net:

«Life is a Blessing»:

Foundation Lejeune:

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