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Baslieux: Reinforcements for Jeanne, 5, a "little warrior" suffering from an extremely rare disease

Baslieux: Reinforcements for Jeanne, 5, a "little warrior" suffering from an extremely rare disease

Since birth, 5-year-old Jeanne Viarre has been battling an extremely rare disease. Her story has moved the village of Baslieux in Meurthe-et-Moselle, the Friends of Nanhol association, and their friends. More than €6,500 in financial and material donations have been raised to simplify the daily lives of parents Solène and Jonathan, who live in the Meuse region.
Since last Wednesday, equipment funded by the actions of the Friends of Nanhol and donations has allowed the Viarre family to introduce Jeanne to the pleasures of hiking. Photo Xavier Jacquillard

Since last Wednesday, equipment funded by the actions of the Friends of Nanhol and donations has allowed the Viarre family to introduce Jeanne to the pleasures of hiking. Photo Xavier Jacquillard

"Jeanne is the first carrier of this disease in France. There's nothing about it in the medical literature. I found two other cases via social media: one in Japan, the other in the United States." In three sentences, Solène Viarre says everything about the loneliness affecting the second of her three daughters. And by extension, those around her.

Based in Damvillers, in the Meuse region, the family visited Baslieux last Wednesday. There, they thanked the mayor, Daniel Mulder, the Friends of Nanhol association, and their friends for coming together to support their "little warrior, Jeanne."

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Aged 5, she suffers from a "chromosomal deletion 1q41q42.12," discovered during the three months of hospitalization following her birth. The consequences of this pathology: delayed growth, development, heart disease, etc. "We manage to get information because geneticists have looked at nearby deletions. But for clinical trials, we would need a certain number of cases. Since we are alone, there is nothing. And no treatment," says Solène.

In addition, Jeanne suffers from type III esophageal atresia: her throat is a blockage, preventing the passage of food and saliva to the stomach. "She can't take anything by mouth; she has to be fed through a gastrostomy," explains her father, Jonathan. More than twenty trips to the operating room have changed nothing.

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This malformation makes "Jeanne very fragile in her respiratory system. The slightest cold can land her in the emergency room," says Solène, who has experience. The mother always keeps a pack of disinfectant wipes on hand, just in case. "We're in the unknown. We don't know where we're going," summarizes the father. The couple is forced to constantly adapt.

"The urgent thing is that she needs to get back upright very quickly," Jonathan continues. "Jeanne has strength in her legs, but she can't stand up. Her muscles and tendons are contracted. She has to work... to avoid surgery." One more. The potential solution lies in intensive therapy, provided in Spain. Barely back from the first session, Solène and Jonathan are already planning the next, expensive one, for spring 2026.

For six months, the village rallied around the world to help Jeanne, 5, who suffers from an extremely rare disease. Photo Xavier Jacquillard

For six months, the village rallied around the world to help Jeanne, 5, who suffers from an extremely rare disease. Photo: Xavier Jacquillard

"When we heard your story, we were all very touched." Back in Baslieux, last Wednesday... His voice tinged with emotion, Yoann Thill hands a check for €1,870 to the mother. The manager of the Thill Paysage company and around ten of his employees contributed.

Since December, the story of Jeanne's journey, as short as it was harsh, has aroused a surge of sympathy in Baslieux . Then beyond. Concerts , running and walking , relays... The efforts of the Friends of Nanhol and a dozen donors have resulted in more than €4,600 in financial and material donations, making the Viarres' daily lives easier.

In the Baslieux schoolyard, parents appreciate every word, every gesture of attention from the welcoming committee. For one evening, Jeanne and her family feel a little less alone. Tomorrow, the "little warrior's" daily struggle will resume in earnest. Thursday is physiotherapy.

Follow on Instagram: “@un_combat_extraordinaire”.

Le Républicain Lorrain

Le Républicain Lorrain

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