“Through his frequent consultations, his advice, his encouragements, his gestures of love and understanding, and his gentleness, Lejeune enabled all these children, sometime conscious of their own distress due to their disability, to accept themselves and see themselves as fully human. He also enabled something absolutely necessary: for the parents of these children to work on themselves to start feeling real love for these children, and the possibility of the parents and their children to come back to feeling the dignity of a human being, all Possessors of the same light as their kin. He enabled thousands of families to stay or come back to being homes full of shared affection and tenderness.”
What Pr. Lucien Israel has to say
The very last one
To celebrate the 20th anniversary of the creation of the Foundation and the death of Jérôme Lejeune, 4 pages have been added to the Letter of the Foundation. This supplement tries to take stock of a theme which was very dear to professor Lejeune and very founding concerning the Foundation’s actions.
After the Hippocratic Oath, medical research and the discovery of Down Syndrome, it is the fourth and fast subject to be highlighted during this year of celebration. And what could be more natural than ending by listening to those who are at the heart of our daily battles: the patients of professor Lejeune and the Institute?
For 20 years, the Foundation and the Jérôme Lejeune Institute have been ensuring the follow up of thousands of families and children with genetic intellectual diseases.
Beyond the purely medical aspect of their work, the teams are dedicated to building true relationships with the patients, and year after year, bonds have been created. From these privileged relationships, stories were born, anecdotes sometimes very funny, often touching.
The 20 years Christmas supplement is a wonderful opportunity to share some of them with you, a good way of being reminded of the humanity still intact of these patients.
In maths class
Stéphanie, a young adolescent with Down Syndrome, is sitting on her chair in class. Today they are having a maths test.
But Stéphanie hates maths. After a good while spent at looking at her blank piece of paper, she get up and goes over to her teacher…
- Madam, you do know I have a problem inside my head, don’t you?
- Yes, I know, so what?
- Well, because of this problem I can’t do my maths
At the Jérôme Lejeune Institute
Jean-Paul, is 64 and has Down Syndrome. He has been coming to the Institute for several years and knows everyone. In a very natural way, he greets Olivier, employed at the Foundation, a man that he knows well.
- Hello Jean-Paul! How are you?
- I’m fine: I no longer have Down Syndrome!
A little disconcerted by Jean-Paul’s answer and joy, Oliver asks him what he has now.
-I have a pension, I am retired!
… of course : Jean-Paul benefited from an adult disability allowance until he turned 60, at which point pension replaced the allowance. So, as he didn’t get the allowance any more, he was no longer a Down Syndrome patient but a retired patient. Logical.
During Jérôme Lejeune’s funeral
Bruno is one of Pr. Lejeune’s first patients.
During Jérôme Lejeune’s funeral at the cathedral Notre-Dame in Paris, he speaks up and says in a very simple way:
-I am Down Syndrome!
At the theatre lesson
A class of teenagers with Down Syndrome is working on “Le Malade Imaginaire” by Molière. Within the framework of their theatre lessons, they went to the Comédie Française (French theatre) to see the play. The first part of the show turned out to be a bit noisy for the comedians because the adolescents, happy as they were to see the play, kept reciting the lines out loud before the comedians.
During the intermission, the professor explained to them that they were there to see the comedians on stage and that the people in the room had not come to listen to them instead of the comedians. She added that they should see it as an opportunity to watch the comedians and see how they play.
The next part of the play went fine. When it was over, their teacher asked them what they had thought of it. Having taken their teacher’s advice very seriously, they had watched very attentively:
-One of the comedians got it all wrong, she had her back facing the audience!
-An there was also one who wasn’t talking loud enough!...