“Hello, I’m Gaspard. Since my mum and dad love to read me great stories, they thought I might tell you mine.“On a Facebook page in his name, the parents of the two-and-a-half-year-old toddler share their experience. Gaspard was born on August 30, 2013 near Rennes. A year later, he was diagnosed with rare sickness of Sandhoff, a neurodegenerative pathology of the central nervous system also called lysosomal storage disease. Starts, blindness, motor and mental deterioration, frequent respiratory infections… So many symptoms that occur three to six months after birth. Caused by a genetic mutation, it affects one in 130,000 children in Europe, according to Oprhanet, the portal for orphan diseases. Currently, there is no treatment and life expectancy rarely exceeds four years.
“I fight every day to cough, swallow well, breathe well”
The young parents, Marie-Axelle and Benoît Clermont decided to create the page “Gaspard, between Earth and Sky” on Facebook to tell their daily life, testify to this terrible disease but also to thank the people who support them in this ordeal. More than 30,000 subscribers follow their fight, often through the voice of Gaspard: “I fight every day, to cough, swallow well, breathe well, not catch colds or germs, sleep well. And I believe it works. They always look at me with a big smile“. On June 30, Gaspard celebrated his 34th month.
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