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Telethon 2023: Jules’ life transformed by gene therapy
Telethon 2023: Jules’ life transformed by gene therapy – (France 2)
Friday December 8 starts the 37th edition of the Telethon on France Télévisions. The 20 Hours team retraces the journey of Jules, 7 years old, who could not move or even breathe on his own. Today he is full of energy thanks to gene therapy.
On the Patrouille de France base, there is a little pilot with extraordinary courage: Jules, 7 years old. With stars in his eyes, he discovers the Alpha Jet. Curious, insatiable, Jules wants to know everything. A happiness unimaginable until recently. The boy was born with myotubular myopathy. This genetic disease causes severe respiratory distress and extreme weakness of all muscles. Doctors gave him little time to live. But Jules held on, fought.
Prisoner of his body
In 2020, he received a gene therapy injection which will revolutionize his daily life. Until then intubated, prisoner of his body and reduced to silence, the little boy now breathes alone, speaks, walks and devours life. That morning, he was proud to arrive on his own two feet behind the scenes of the Patrouille de France. “Now, at home, we are able to use the chair less. (…) He can do some things standing up that he couldn’t do before”, confides Anaïs Langlais, his mother. With his nose in the air, Jules witnesses the magic of aerial ballet.
