When he was born, Jules would not open his eyes, he barely moved, and in order to breathe he had to be intubated. Three months later, the diagnosis was made: Jules had myotubular myopathy, a rare genetic disease, extremely severe, which was life threatening. The gene therapy treatment designed at Genethon, from which he benefited in January 2020, changed everything in his life. The progress is fast and spectacular.
Jules is now able to breathe without assistance, to eat on his own, to play while sitting on the floor, to speak, and he has discovered he has legs and what they are used for.
The little boy goes from discovery to discovery: "My son is on his feet! In two years, he has caught up with everything he has not been able to live in four years."
Негізгі бет Jules | The Telethon webdocs
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