The verdict came when he was only two and a half years old. Léo Decobert, now 10 years old, from Dunkirk (North), is affected by the Duchenne muscular dystrophy(also called Duchenne muscular dystrophy).
It’s about a rare genetic disease which causes progressive degeneration of the muscles by preventing the production of the dystrophin protein, necessary for their control. Gradually, the patient loses muscular control, and therefore the ability to walk and then to breathe. Muscle stem cells try to regenerate the damaged tissue, but degeneration quickly catches up with this process and eventually wins out.
Myopathy: no treatment to date
To date, there is no no treatment to treat this condition which most often leads to a wheelchair.
However, thanks to donationscollected during the Telethon, Léo has been participating in a clinical trial for almost two years at the I-Motion myology institute, within the Trousseau hospital, in Paris.
Duchenne muscular dystrophy up to 200 new cases each year
Each year, 150 to 200 new patients are diagnosed. Duchenne muscular dystrophy affects 99% of boys. While the disease does not bring the life expectancy of those affected to more than 35 years, research for 30 years has inflated these figures by nearly twenty years in some cases.
Organized by the AFM (French Association against Myopathies) since 1986, the Telethon is one of the biggest popular fundraisers in the world, with more than 2 billion euros raised in thirty years. This year, the event takes place this weekend, December 2 and 3.
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– New promising advance in the treatment of Duchenne muscular dystrophy
