“Thank you, Professor Lejeune, for what you did for my father and my mother.  Because of you, I am proud of myself.”

This brief and unplanned eulogy was given at Jérôme Lejeune’s funeral in 1994 by his patient, Bruno, whose karyotype was one of the first to reveal, in 1958, that an extra copy of the 21st chromosome caused Down syndrome.

You see, when Bruno was born it was believed that Down syndrome was due to some fault of the parent. Many believed it was caused by a venereal infection, or that it was a curse from God. And so these “mongoloid” children, as they were then called, were kept hidden because they brought shame to their families. In fact, people would even cross the street when they saw them because they feared that what they had might be contagious. When Bruno was a child, those we celebrate today on World Down Syndrome Day were an object of scorn, and a day like this day – World Down Syndrome Day - unthinkable. It was Jérôme Lejeune’s discovery, and his example of profound respect for these priceless children, that first began to move the culture toward acceptance, and, eventually, inclusion in society.

The respect that Jérôme Lejeune showed for his patients and their families was a radical departure from what had previously existed. His daughters remember riding their bikes home from school one day and seeing painted on a wall “Death to Lejeune and his little monsters!” (Life is a Blessing. Clara Lejeune Gaymard, 2011).

But Jérôme Lejeune was fearless, and remained their best friend. As one parent reflected, his way of putting a child on his lap, of greeting him “as though he had a prince in front of him, kindly, and with infinite respect,” showed his exceptional attentiveness.  “He had a gift that set you at ease and calmed you down when you came for a consultation; it was as though finally you were setting down a burden.”  “He made it possible for us to live.  He made us live, he gave us our dignity back, he drew us out of the pit.” 

It might not be going too far to say that World Down Syndrome Day was made possible by Jérôme Lejeune’s discovery, and his example of treating those with Down Syndrome and their families with respect. He is called the father of modern genetics, but in a sense he is also the loving grandfather of all those living with Down syndrome.

So today, in 2014, we have much to celebrate. We have come a very long way, at least in many parts of the world, toward acceptance and inclusion. But we still have far to go toward full inclusion and acceptance of those living with Down syndrome. 

In the United States, and in other countries of the West, managing prenatal diagnosis may remain one of the last major obstacles we have to overcome in accepting those conceived with Down syndrome.  The oft-quoted statistics of terminations following prenatal diagnosis are tragic testimony to the lack of acceptance we still face in our modern culture of inclusion.

How can we have, on one hand, sociological data that show overwhelmingly the happiness and love children with Down syndrome bring to families; and yet on the other, consuming fear and fatal rejection by a majority? Today we should not only advocate for those living with Down syndrome – but also for those who were not given a chance to live. Even more, we should insist on getting good information into the hands of mothers and fathers who face the terrible decision whether or not to terminate, and try to spare them the consequences of a choice that often brings so much sadness and despair.

The recently deceased prochoice bioethicist and disabilities rights activist, Adrienne Asch, wrote that prenatal diagnosis can provide at most a first impression of who a child will become.  But many still live in fear of what prenatal diagnosis reveals, and they act on their first impression in the most radical way, by eliminating those who evidence shows will probably bring them the greatest joy.

So, on this World Down Syndrome Day, 2014, let us commit ourselves to working toward full acceptance of ALL those living with Down syndrome - including those in the womb.

The Jérôme Lejeune Foundation is dedicated to improving the lives of those living with Down syndrome through research, care, and advocacy. We are intent on changing the story that is given at a prenatal diagnosis from one that inspires fear and dread, to one of hope, promise, and love. Parents deserve that—and so do their children.

#DearFutureMom