Zacharie’s parents have agreed to take part in the clinical trial, ACHTYF. For them, it is just an ordinary way to help research to progress. For Zacharie, it is just another opportunity to eat more petit suisses (French yoghurts)…
When Zacharie enters the corridors of the Foundation, he walks into success. Jumping from one arm to another, he doesn’t hide his joy and gives everyone enough time to admire him. Because as well as being cute, Zacharie is a little celebrity. Indeed, he is the first child to be integrated into the clinical trial ACHTYF, initiated by the Jérôme Lejeune Institute.
Zacharie’s parents became aware of the fact he had Down Syndrome when he was born, « the greatest choc of our lives » his father confesses. But as Gabriel, his big brother would say, “Zacharie is really cool, he has an extra chromosome”, and the family joyfully welcomed this different baby. Their family and friends being completely unfamiliar with Down Syndrome, they started to do some research. Quite rapidly, they chose the Jérôme Lejeune Foundation for their son’s medical follow-up and from the very beginning, they started enquiring about therapeutic research programmes.
If they can help researchers and contribute to finding a treatment, why think twice? The Jérôme Lejeune Institute mentioned the clinical trial ACTHYF to them. It was to be carried out on very young patients, carriers of Down Syndrome and aged from 6 to 18 month at the time of the inclusion, to study the effects of two molecules on their evolution.
Jean-Luc and Najate immediately accepted to include Zacharie into the study. It is all very simple for Zacharie: during the year of the study, he must spend two or three days at the Institute to take a series of biological and psychomotor tests and take two pills a day. According to his father,” it is not very difficult to make ACHTYF go down when it is mixed in extra petites suisses after dinner.” This is the best part of the study according to Zacharie, who loves milk products.
As the study is still ongoing and is being carried out in double blind, until now, no one knows what direct effects these products have on Zacharie’s evolution. But that is not really what counts for Zacharie’s parents. Their three year old little boy is still growing and is developing a character of his very own. He spends three mornings a week at the CAMPS and the rest of the week at a nursery where he gets on with his life, surrounded by friends of his age.
Zacharie has a very full life, which include the arrival of Adèle, his younger sister 18 months ago and his passions. Yes, Zacharie has two great passions: screens and music. Being the son of a computer engineer, he perfectly masters the family’s i-pad. And when he has finished with that, he is off dancing to Daft Punk.