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.
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.
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