Mum, Delphine and dad, Jean-marc We are the parents of 2 boys, Arthur the eldest and Gabriel, aged 17. Gabriel has been a carrier of ring chromosome 20 syndrome since the age of ten. We live in the south of France in a small village called Argelliers, near Montpellier.
“A name that frightens or disturbs: the disabled. It takes a long time to accept this word, but in the end it’s the one that takes hold, the French language has chosen this term, I have nothing else to suggest, let’s just remember that it’s not an insult, we’re all moving along the same path, and everyone is shouting out loud that a disabled person is first and foremost a human being”.
We’re very worried, Gabriel’s number of friends has dwindled over the years and today he has just one friend left. Because of his difference, does he now find it hard to reach out to others and vice versa?
Who is this surprising little 17-year-old? Gabriel was, is and above all is curious! !
With a fierce desire to learn, to discover, to understand, to observe, to question things. This greed for knowledge is his driving force, his nourishment and a need to be satisfied. It will not have escaped you that curiosity implies enthusiasm, interest and passion. All of which explains his good academic record. Fortunately, the illness has not affected his personality. He shows resilience, fearlessness and great mental strength, which I have to admit are inspiring for us.
School was very difficult, and he nearly lost his footing, not because of the density of the teaching, but sometimes the teaching staff are strange, to say the least?
Gabriel is 18 years old and is much more of an actor and decision-maker in the evolution of any treatment. In consultation and agreement between Gabriel, the doctors and ourselves, we have slowly withdrawn many medicines that we could tell were useless. Since June 2023 Micropakine (prolonged release Sodium Valproate): morning 250 mg, evening 500 mg; Lamictal (Lamotrigine): morning 50mg, evening 50mg why have you kept only these two drugs? After lowering the dosage of Micropakine and Lamictal one after the other, Gabriel told us that he was seeing a deterioration, so we stopped lowering the dosage and reintroduced the initial dosage.
We’re waiting to see whether VNS will be effective !!!!!!!