On a December day in 2001, I discovered Moebius Syndrome! My name is Laurent and for 31 years I lived without knowing the name of the rare condition I suffer from and which will be with me for the rest of my life. From an early age, I recall my parents telling me, as the doctors had told them, that I suffered from a congenital facial paralysis. Basically I can’t close my mouth, smile, or articulate the sounds ‘p’, ‘b’ or ‘m’, because the facial nerves that control these lip movements don’t function.
What my parents might have also noticed and questioned is the fact that I can’t move my eyes from side to side either. Having undergone an operation very early on for strabismus, my parents probably thought that my lack of lateral eye movement was a direct consequence of the operation. In fact there is a totally different reason, and since December 2001, I have been able to put a name to my very rare condition, which is called “Moebius Syndrome” and which combines a double paralysis of the facial and ocular nerves.
I became a member of the Syndrome Moebius France Association in 2003 and two years later replaced Serge Letisserand as president of the Association.
Serge is the father of Fanny, born on 24 March 1989. Fanny was diagnosed with Moebius syndrome when she was 9 months old. Her sensitivity and love for life gave her parents, Serge and Michelle, a new and different vision of what life should be about. The lack of information concerning the syndrome and the fact that it remained virtually unknown both in the medical and public domain, prompted the Letisserands to set up the Association Syndrome Moebius France in 1997.
Since its creation in 1997, the Association has gone from strength to strength, with its aims remaining to:
“Syndrome Moebius France” is listed in the rare diseases database, “ORPHANET” and is a member of EURORDIS “The European Association of Rare Diseases” and its French branch, the “Alliance des Maladies Rares” which groups together more than one hundred different associations representing rare illnesses.
A number of medias have already been involved in coverage of Moebius Syndrome including:
On behalf of the Association, I should like to thank the “Fondation Groupama”, the Caisse d’Epargne, the “Fondation TOTAL” as well as various branches of the Rotary Club for their financial support of our cause. I would also like to thank all the volunteers who help the families who organise our AGM, which takes place each year in a different region of France
Achievements to date include:
As I embark on the final year of my mandate as president, I carry the hope that I can count on all adults with Moebius Syndrome, whether members of the Association or not, to continue to fight for our cause, but most of all I count on our children to alter mentalities and to change the way society looks long-term at those who are “different”.
Laurent Ecochard, President
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