Published on 20.12.2022
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"I am a doctor, father of a son who, I quickly realized, had a significant psychomotor disability. He did not pronounce his first word until the age of 4, in the shared emotion of all his family. We consulted many specialists, but unfortunately at that time we could not get any explanation about the origin of his handicap before he reached the age of 25.
During all these long years, we were bruised not to know. We felt very guilty about being responsible for the genetic transmission of this disability. And we were in the helplessness of doubt to project ourselves, as medicine was unable to give us real answers.
Years later, my other children, who had not been affected by this same disease, decided to become parents themselves. I wanted to answer their legitimate questions and gather as much information and medical certainty as possible about the potential risks of transmitting this disease to their future children. We therefore resumed our research, hoping to finally succeed in this process to understand the origin of the disease that affected our son.
Thanks to a meeting with the Institut Imagine and Professor Stanislas Lyonnet, its Director, we obtained an answer enlightened by the scientific acquisitions of recent research of the Institute. It was a chromosomal anomaly that occurred accidentally during an initial phase of cell multiplication, a real faux pas of our nature, in the process of constitution of the living being. There was therefore no risk of recurrence for the brothers and sisters.
We then gained serenity, regained hope, our future became clearer and our anxieties calmed down.
The story with the Institut Imagine could have ended there, but in addition to a medical response based on science and its unavoidable technicality, our exchanges with Professor Lyonnet were extraordinarily human.
After this long journey of 25 years, during which hope was eroding, Prof. Lyonnet helped us to live better with our son's handicap and to consider life in all its richness of differences in a relationship that goes beyond compassion, sending each of us back to bear our human condition.
It is difficult to describe this encounter as anything other than a soul enhancer. The Institut Imagine helped us as parents, but it also helped all the siblings, to take a step that allows us today to better cope and share the suffering with our Arnaud.
When you are treated at the Institut Imagine, you know that this place is extremely sharp and advanced in the field of science and medicine concerned with the common well-being. It is an extremely reassuring place for parents. Beyond genetic diagnosis, the strength of the Institut Imagine is to be turned towards a dimension that is rarer in medicine today, through daily support and guidance, a human medicine, aiming to improve the psychological well-being of the whole family.
This fundamental relational approach would benefit from being taught and reminded to all future practitioners and physicians. It is the foundation on which science and technicality accompany us in this art of caring for our loved ones.
By giving tools in the face of the situation of disability, the message conveyed to families is essential because it helps them to understand the difference, to accept it and to live better with the disease, to make their own the distress of others, of those whom we should never stop calling our fellow human beings, called to share the same world.
Our energy is increased with each consultation and we no longer feel alone. There is oxygen at Imagine!
It is for this encounter with prodigious emotional content and for all the humanity received, that my family and I support the Institute by doing our modest part.
So, since 2018, every year, I support, with donations, all the brilliant researchers who work there. Their research benefits all children. Encouraging the researchers, showing them that we are committed to them is very important to us.
If Imagine needs us in order to live, we all need Imagine for us to live.