Paul Crolard, a 4-year-old from Dinard, will be one of the ambassadors of the 2024 Telethon which will take place on November 29 and 30. The child has epidermolysis bullosa. A rare disease for which there is no treatment yet. His parents testify to help the research move forward.
It’s the story of a 4 year old boy. He has a big smile, plays with toy cars, laughs when we say “prout!” “. Like all boys, he sulks sometimes. But more often than not, he enjoys life to the fullest. And this despite a daily life strewn with pitfalls since his birth.
“Paul suffers from epidermolysis bullosa (EB). It is a disease that affects the skin and can take different forms.informs his mother, Marie Epinette, 38 years old. The first symptoms appeared a few weeks after his first cry but it took more than a month for a diagnosis to be made at the South Hospital in Rennes.
Butterfly disease
The disease is too rare to consider treatment in the Breton capital. The family must then turn to one of the two specialized centers that exist in France. “That’s when we realized it was very serious. First, we went to the Necker hospital in Paris. Now, Paul is being followed at the Archet hospital in Nice. »
Epidermolysis bullosa is also called “butterfly disease”. A nickname that hides a sad reality. “The skin is as fragile as a butterfly’s wingsexplains the Debra association which brings together and supports patients and parents of patients suffering from epidermolysis bullosa. Everyday actions like walking or eating can be extremely painful. Severe forms of epidermolysis bullosa can be compared to severe burns, except that we end up curing a burn, whereas to date we have not cured the illness that affects Paul. »
Return to Dinard (Ille-et-Vilaine) where Marie Epinette, Hugo Crolard – the dad – and Paul live. The child is playful, curious but he has a sword of Damocles hanging over him. “The limit is pain. Like other people with this disease, he has a pain tolerance threshold that we cannot imagine. » Under his clothes, only the numerous dressings give an idea of the complications that epidermolysis bullosa has on everyday life.
In the living room, the boy pouted. “I don’t like people talking about my ailments. It’s not fair”he confides. “It takes time. You will understand »reassures his mother.
“Our whole life has been turned upside down”
In the wake of the illness, the couple took time to open up to others. “When Paul was a baby, nurses came every day to do the dressings. There are appointments and medical exams. Operations too. That’s a lot of information. It’s a tsunami. Our whole life was turned upside down. »
When Paul blew out three candles, Mary was “at the end”. The couple joined the Debra association. “We needed help”. Talk, “this made it possible to de-dramatize the situation, to project oneself”. Also take advice to move forward.
Telethon 2024 Ambassador
In 2023, a party was organized for Paul in the nursery. A first step to allow parents to raise awareness about this disease. A few months later, the couple will address all of France. And for good reason, Paul is one of the six ambassadors for the 2024 Telethon.
The stakes are high. “At the moment, there is no treatment. If we mobilize, it is to help research. We want our son to be able to live normally. » On the other side of the Atlantic, American researchers are working on a gene therapy that could improve the quality of life of patients suffering from epidermolysis bullosa. But there is still a long way to go.
“If a real revolution in medicine is underway, 95% of the 6,000 to 8,000 rare diseases remain without treatmentrecall the organizers of the Telethon. For Paul, and other patients, there is an urgent need to find a treatment! Your support is essential, together, let’s continue to fight to achieve new victories. We are counting on you on November 29 and 30! »
