The Catholic Thing
A Treatment for Down Syndrome? Print E-mail
By Austin Ruse and Cathy Ruse   
Friday, 16 December 2011

We were married later in life, thirty-nine and forty-seven, and hoped for children but knew the odds were not with us. We also knew that at thirty-nine, the risk of Down syndrome or other genetic disorders was high. Three miscarriages did not assuage our concerns.

We remember the trauma of looking for signs of life in those sonogram images: waiting, searching in vain for a heartbeat, and then the inevitable physical and mental pain when the miscarriage came.

And then, a fourth pregnancy, and at last the joy of seeing that little heart beating. But with it, the worry that our little one might have Down syndrome.

We were worried, but resolved. There was no question: this child was a gift from God and, no matter her condition, her humanity was perfect and her dignity complete. Still, there was unease. 

It became clearer over time, through observation and the absence of physical signs during routine ultrasound exams, that our unborn child likely did not have Down syndrome. And when Lucy was born she was the picture of health. 

We became pregnant again three years later. The worry, the resolve, returned. This one, surely, will have Down syndrome. She didn’t.

That’s the fear that grips parents in this day and age, and perhaps always has; that their child will less than “perfect,” less than normal. You envision a lifetime of unusual care, stares from strangers, the loneliness and isolation of the child. And what about when you die? Who will care for her?

These fears account for the horrific statistic that 95 percent of children with Down syndrome are aborted. This is a holocaust.

There is reason for hope, however. Researchers connected to the Jerome Lejeune Foundation tell us that within ten years there will be a treatment for Down syndrome. Not a cure, perhaps, but treatment to help Downs patients overcome their intellectual disability and live normal lives.

         Trisomy 21

The story of Trisomy 21, the genetic disorder that causes Down syndrome, what used to be called mongolism, is remarkable. It follows the life of a remarkable man, his discovery, and his foundation, which is poised to continue making history.  

In 1958, Jerome Lejeune was a thirty-two-year-old geneticist working in a Parisian laboratory when he discovered the genetic marker for Down syndrome. Only two years before, scientists had discovered that the human species possessed forty-six chromosomes. Lejeune was able to count forty-seven chromosomes in children with Down syndrome. He went on to discover several other chromosomal anomalies including Cri du Chat Syndrome.

His work was hailed around the world. He received the Kennedy Prize in 1963 from the hand of President Kennedy himself. He received the William Allen Memorial Award, the highest honor in genetics. His work formed the foundation for whole new fields of genetic research.

And then, the horrific irony. A method for diagnosing Down syndrome in utero was developed, abortion was decriminalized, and it became open season on unborn babies with intellectual disabilities. His discovery led to a holocaust.

Lejeune spent the rest of this life fighting this holocaust. And for this he lost almost all of his worldly prestige. He and his family received death threats. A well-deserved Nobel Prize never materialized.

          Dr. and Mrs. Lejune and friend.

None of this mattered. For Lejeune, what mattered was the children:  “I see only one way left to save them, and that is to cure them.”  He dedicated his life to finding a cure for Trisomy 21 and spent his final days traveling the world giving lectures about the dignity of the human person, no matter how small, no matter the location, no matter how disabled.

Lejeune died of lung cancer in 1994. Just before that, his friend John Paul the Great created the Pontifical Academy for Life and named Lejeune its first president. When he died, John Paul prayed at Lejeune’s grave in France.

Two years after his death his collaborators created the Jerome Lejeune Foundation and Institute to research treatments and cures and to care for those afflicted with these intellectual anomalies. The Lejeune Foundation has grown to become the largest private funder of such research and their institute in France treats more Downs patients than any institution in the world.

The Jerome Lejeune Foundation is headquartered in Paris but in recent months has opened a U.S. branch that is headed by the remarkable Jean-Marc Guilloux. It was at a reception in Washington two weeks ago where a researcher from the University of California-Davis connected to the foundation said that a treatment for Downs is but ten years away. 

This put us in mind of ourselves and our own worries and also all those women in the United States and around the world who delayed having children for whatever reason and now face pregnancy in their thirties. We know a woman with three beautiful daughters. She longs for more children but, in her late thirties, she fears Down syndrome and has turned her back on more children.

It would be heaven sent if Lejeune researchers discover a cure for Down syndrome and other intellectual disabilities. One must remember, however, that Lejeune himself and all those parents of children with Down syndrome never look upon them as burdens but as blessings, perhaps sent by God to teach us joy and love and happiness.

The cause for Jerome Lejeune’s canonization was opened four years ago. Oremus.

Austin Ruse is the President of the New York and Washington, D.C.-based Catholic Family & Human Rights Institute (C-FAM), a research institute that focuses exclusively on international social policy. The opinions expressed here are Mr. Ruse’s alone and do not necessarily reflect the policies or positions of C-FAMCathy Ruse is Senior Fellow for Legal Studies to the Family Research Council.

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Comments (10)Add Comment
written by Dave, December 16, 2011
One of the most amazing stories I know of a Down Syndrome child is a young girl in Spain. Her father is a pharmacist; her mother, a lawyer. They determined that they would raise their daughter as they had raised their other children. The young lady reads -- she loves to read, in fact. She holds a job she loves. She lives independently. She goes out with her friends. She walks into any room and the sun comes out.

Another Down child known to us can already be described as a saint. He has gone through three rounds of leukemia, suffering incredibly through each treatment and offering the suffering for those who asked for his prayers. He met Bl. Pope John Paul II. He spreads hope everywhere he goes, and he goes a lot of places.

Mr. Ruse's last paragraph of an extraordinary article hits the nail on the head. Down Syndrome people love and they live with joy. As I survey the vast human panorama and see so many people whose faces are marked by suffering, anguish and unhappiness, I have to ask myself who, really, is living a "normal" life and can we learn from the gifts to us who are people with Down Syndrome.

So Mr. Ruse poses two challenges to us, right out of the heart of our Catholic Faith: the first is to support tirelessly, in the ways that we can, the good work of those who seek to alleviate human suffering. The second is to see the hand of God and the mysterious workings of grace even in those situations we would normally call tragedies.

You see, my wife and I couldn't have children, nor did things align for us to adopt. We both love children and would have loved to have our own. But God knows best and in acceptance of His will, of those things we cannot change, we find our peace, which can lead to joy when we learn not only to accept but to love the actual circumstances of our lives. For it is those circumstances, and not the ones we wish we had, that Christ our Lord came to redeem at his Incarnation, the celebration of which is upon us.
written by Leticia Velasquez, December 16, 2011
Dave, your comments are spot on. As the mother of a nine year old daughter with Down syndrome, my inner peace began when, before her birth, I learned of her disability, and began to open my heart to her as she is.
Was it due to a pre-natal screening? No, it was the Lord speaking to me in the silence of my heart while I was expecting Christina. We were at Mass, and I 'heard' "You're going to have a child with Down syndrome." I had difficulty accepting this, so, while on the Communion Line, the voice spoke again, "I want you to accept this child as a gift from My Hand when you receive Me." Now there was no doubt, Jesus had a call for me to deepen my vocation as mother. And to enter another; as advocate for those like Christina, who are so widely rejected before birth.
We who love those with Down syndrome have an unofficial (so far) patron saint in Dr Lejeune. When I read his biography "Life is a Blessing" in 2006, I was inspired to write about the joy Christina spreads everywhere she goes. She is truly a Missionary of Love.
I pray for the promising research initiatives to become reality because I want my Christina to think and speak without struggling, to be independent if she chooses. But I have no doubt that whether this becomes reality or not, she is already a gift from the Hand of God to a dark world which urgently needs her lessons in love.
written by Katie, December 16, 2011
I don't think a cure for Down Syndrome is "Heaven sent." The intellectual disabilities are not the problem; the attitude towards them are.
written by Brendan , December 17, 2011
Katie is exactly right. To attempt to find a 'cure' for DS is to overlook the hidden gift they offer - and it is a gift of eternal significance. It also assumes that the way we 'think' at this point - through abstraction, conceptual determination, discursion - are ideal. In fact they are not. DS people 'think' less in abstractions and more in concrete realities. They remind a world like ours, a world that has become distant and detached from one another, that the truest knowledge is the affection of love, not the intellection of cognition. This is what my son with DS has been teaching me. Does he need a cure? Not at all. I do, so that I might communicate with him better.
written by F. Nazar, December 17, 2011
I know of one child cured through the current apparitions of Virgin Mary in Salta, Argentina (as well as my 4 year old deaf nephew and other "impossible" cases: cancer, heart, neurodegeneration). Have faith!
written by Papa, December 17, 2011
We had a daughter, our 7th child at age 41. At the time people asked "If we knew what we were doing"? My response was it would be better to have a mentally retarded child than a spiritually retarded child. I don't think they ever saw themselves spiritually retarded when I said it but I hoped it made them think later. Down syndrome children don't think they are mentally retarded and they think they are normal. Perhaps the world is mentally retarded because they can't see the image of God in these beautiful children.
written by Tony Esolen, December 18, 2011
One of the most blessed and happiest families I know of -- and they'll probably know who I'm talking about if they read this -- has been blessed with two Down Syndrome children, both girls. Their last child, last of seven, is a normal and strapping young lad. When I've been to visit, I've sat down at the piano to play hymns, and one of the girls gets out her violin to accompany me, and the other girl sings out. My own son is autistic, and long ago it came to us that the "disability" was a great blessing. Truly I say to you, said the Lord, that unless you become like little children, you shall not enter the kingdom of Heaven.
written by daisy, December 19, 2011
"We" did not become pregnant. Your wife did. And let's not go too far with the sentimentality. A child is gift from God but if I could cure mine of Downs I certainly would jump at the chance. Unless you are rich every parent of a child with Downs knows that their kid is going on his or her own one day. What will happen? Is my child going to be preyed on? And don't assume that your relatives and other children will step in. They might or they might not. My relatives are great for good times but have all made themselves scarce when I needed help. Parents' facing a Downs Syndrome pregnancy have a lot to deal with. Don't try to diminish that.
written by G Sagmiller, December 22, 2011
Just a fast note, my son is also a club member and has Down syndrome. I just happy someone is trying to help. God bless them.

G. Sagmiller, Dakota’s Dad of the PBS heartwarming documentary about a father's search for the truth about down syndrome!

Mr. Girard Sagmiller
written by ara, July 22, 2013
I have a genetic disease causing intellectual disability and would have preferred to have been aborted. The real horror is living a life that's been completey destroyed by a genetic error. It is painful, lonely and degrading.

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