"Lejeune's Wall of Heroes" and "Stories of Love and Hope"

In the United States and other countries of the west, we are living with an intolerable contradiction. On the one hand, we have research that shows how happy families are who have family members with Down syndrome (almost 100%), but on the other hand we are constantly faced with the horrifying reality that the majority of children who are conceived with Down syndrome are never given a chance to live. The Jerome Lejeune Foundation takes every opportunity to work toward solutions to this problem, and to emphasize the injustice also being committed against women and families.

One very effective advocacy tool is to make sure families are provided with good information following a prenatal or postnatal diagnosis. We are proud to have been a part of passing “Chloe’s Law” in Pennsylvania last summer – Our state’s Down Syndrome Prenatal and Postnatal Education Act – but these laws need to be supported by helpful resources that can be given to women following a prenatal or postnatal diagnosis.

What more encouraging support can we provide than to share the positive experiences families have, and the beautiful and happy faces of those who are so deeply loved by their families and friends. We have recently launched two special initiatives through our social media channels:

Stories of Love and Hope is a collection of stories provided by families who are willing to share their experience of receiving either a prenatal or postnatal diagnosis of Down syndrome, or any other genetic intellectual disability.

Lejeune’s Heroes is a visual feast of faces and testimonies sent to us by families who want to pay tribute to their loved ones with Down syndrome, or another genetic intellectual disability.

In an article published in Intellectual and Developmental Disabilities in 2013 called “Receiving the Initial Down Syndrome Diagnosis: A Comparison of Prenatal and Postnatal Parent Group Experiences,” the authors revealed that what gave parents the most encouragement after their diagnosis was meeting other families. One was quoted saying, “Talking to parents of kids with DS and meeting beautiful children with DS helped us to be comforted that our son would be just like any other child.”

We hope that through our “Stories of Love and Hope” and “Lejeune’s Heroes,” parents who have received a prenatal or postnatal diagnosis will find support by having the opportunity to meet families, at least virtually, and know that they, too, will fall in love with their child the first time they hold him or her in their arms.