Virginie, mother of Coline, 13 years old

A late diagnosis

So much unknown

A general misunderstanding of this difference, of this functioning

We are lost in front of you, in front of this genetic disease

And as is often the case in society, misunderstanding leads to judgment, to interpretation, everyone gives their opinion based on their own codes....

It can't work like that!

We cannot feel judged, rejected, isolated like that.

We must accompany, listen, understand and not stop at appearances, communicate with gestures, not words, keep in touch...

We no longer want to be the only ones, destitute, who believe in you,

We no longer want to stand alone against this icy wind...

We no longer want to fear the future... when we are no longer here

We no longer want to question ourselves and worry about looking at you and not knowing if we are making the right decisions for you...

We want to give you the best

We want to see only smiles on your face, no frustration, no sadness, just smiles...

We still have so much to tell you, and to say about you,

My "Myt(he)"

Your mom

February 2025