My name is Anne-Lorène,
It was in the 7th month of pregnancy of my mom that it was seen a cyst with my brain and then all was very quickly.
I was followed at once, even in the belly of mom, and then as of my birth, October 06, 1990.
I was 3 days when I had my first seizures, and then all was connected: eyes funds, EEG, Scanner, IRM and the verdict fell: I have the Aicardi Syndrome.
The Aicard Syndrome. is a rare disease which is for the girls (mortal among boys) discovered by the Pr. Jean Aicardi in 1965 (which me consulted in December 1991).
The Aicardi young girls have seizures (spasms in inflections), ocular problems, with the vertebrae, the brain (absence partial or total of the corpus callusum, this small bridge between the 2 hemispheres of the brain).
The handicaps which result from it are more or less severe. For my part, I am young girl who does not hold sitted: attached to a hull, in its wheel chair, which does not go and which does not speak.
When I was little, I had long convulsions and I was gone often urgently hospitalized; now, besides some spasms, that goes better.
I am a small rascal who interess with all, which likes the company, to have many people around her (which must pay attention to me and which must look at me!), I can render comprehensible myself by my mimicry and my glance; I love books, to look at the albums photographs and the catalogues, to make them fall from my shelf to attract the attention and overcoat all , I love to laugh! I love life!
I like much when me am complimented: that I am beautiful, that I have beautiful clothing and love particularly the kisses. I would like only to pass one small message: of course the life of my parents rocked this July 1990 when the doctors have saw this famous cyst with my brain, of course the life is not easy all the days for my parents and their moral is in “teeth of saw”, but my presence with them is a true radiation: my glance and my smile illuminate their life.
I am perhaps a small handicapped girl, but I have brought much things, a great richness, with my parents and their entourage
And it’s why they "militate" for a recognition of my disease and it’s thus that created an association: the Anne-Lorène’s Friends : A. A. L. - Syndrome d’Aicardi (site www.aicardi.info and an e-mail:contact@aicardi.info) for, inter alia, my wellbeing and to promote research on this disease in NANCY, the city where I was born, and which lays out a famous laboratory of cytogenetics.
In English...
A Anne-Lorène,
Depuis que tu es née,
Pour nous tout a changé :
Tu nous as fait ouvrir notre cœur
Sur le monde extérieur.
Bien sûr, il y a des moments durs,
Mais tout ce qui est sûr,
C’est que nous savourons les plus doux,
Surtout le bruit de tes bisous !
Seule chose que tu sais faire,
Et dont tu es si fière,
Pour nous dire à ta manière :
J’aime mon père et ma mère.
Tu n’es pas comme les autres jeunes filles :
On te lave, on t’habille, on te déshabille.
Tu ne parles pas,
Tu ne bouges presque pas ;
Et pourtant, nous te comprenons,
Et ensemble, nous nous promenons.
Pour nous, il n’y a plus de différence,
Et c’est avec une joie immense,
Que nous sommes heureux de te présenter :
« Voici notre jolie poupée ! »
Tu verras,
Un jour viendra,
Nous arriverons à soigner
Les nouveaux bébés,
Qui auront le Syndrome d’Aicardi,
Mais si on te le dit !
Nous persévérerons, chose promise,
Pour qu’un jour ce grand rêve se réalise.
Malgré tout ce qui peut se passer,
Tu seras toujours à nos côtés,
Pour continuer à nous donner des ailes,
Et lutter pour toutes les autres Demoiselles.
Chère Anne-Lorène,
Notre petite Reine,
Saches que tu es pour nous, c’est clair,
Le plus beau cadeau qu’on ait pu nous faire !
Tes parents,
Qui t’aiment tant ...
en français ...
With Anne-Lorène,
Since you were born,
For us all changed:
You made us open our hart
On the external world.
Of course, hard moments ago,
But all that is sure,
It’s that we enjoy softest,
Especially noise of your kisses!
Only thing that you can make,
And you are so proud,
To say to us to your manner:
I love my father and my mother.
You are not like the other girls:
You are washed, one equips you, one strips you.
You do not speak,
You almost do not move;
And yet, we understand you,
And together, we walk.
For us, there is no more difference,
And It’s with an immense joy,
That we are happy to present to you: "Here our pretty headstock! "
You will see,
One day will come,
We will manage to look after New babies,
Who will have the Aicardi syndrome,
But if it is said to you!
We will make all, promised thing,
For that a day this great dream is carried out.
Despite everything what can occur, You will be always at our sides,
To continue to give us wings,
And to fight for all the other Young ladies.
Dear Anne-Lorène,
Our small Queen,
That you are for us, it knows clearly,
The most beautiful gift that one could make us!
Your parents, Who love you so much.
Maurice & Annick Perroux
02-21-2005
