Eure. A huge surge of solidarity around Sohan Delamarre and his family in 2024

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Bernay Editorial

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Jan 2, 2025 at 6:50 a.m.

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Sohan Delamare, born October 15, 2012, residing in Mesnil-en-Ouche, near Bernay (Eure) carries the genetic syndrome of Phelan Mc Dermid (chromosome 22 Q Ter). There are reportedly 1,500 cases identified worldwide. There is a French association for Phelan-McDermid syndrome. And locally, an association “For the smile of Sohan”, which spares no effort to raise funds to improve the daily life of young disabled people.

A cocoon and many supports

From birth, Sohan suffered epileptic seizures; it was for him and his family the beginning of the discovery of the hospital world.

Cindy the mother, Frédéric the dad, Jordan (14 years old) and Ethan (9 years old) the two brothers form the family cocoon in which Sohan lives. The Delamare family lives in a house adapted for the disabled in Sohan, in Mesnil-en-Ouche. Furthermore, the Medical-Educational Institute (IME) of Pont-Audemer White Butterflies has been welcoming Sohan for 8 years. He is a half-boarder there. The establishment picks him up four days a week. However, at the slightest health problem, parents must immediately take care of it.

Sohan is 11 years old and suffers from an incurable illness. ©Serge VELAIN

Her mother, Cindy, always on the alert, was unable to maintain a professional activity. His dad Frédéric, who works night shifts in retail, also takes care of Sohan on a daily basis. Together, they are very active within the association “Pour les smiles de Sohan”.

Séverine Crettémanager at the Carrefour market in Brionne, is the good fairy who pushed the Delamare couple to create the association “For the smiles of Sohan”. Nadège Bouliergeneral director, and Jezebel Brebis, director supported her. The Carrefour group, as part of the “Les Boucles du Coeur de Chez Carrefour” association, sponsors the association and helps it financially.

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More than €24,000 raised

Since May 2023, date of its creation, the association raised more than €24,000including nearly €8,000 through Carrefour initiatives. One of the actions quickly implemented was the collection of plastic cans, resold to a scrap dealer.

What is 22 Q Ter genetic syndrome?

In genetics, professionals use the term “syndrome” rather than disease, because the latter is an alteration of the genetic heritage, while a disease is an alteration or disorder of a living organism. Thus, Sohan Delamare suffers from the 22 Q Ter genetic syndrome. In Sohan, it is the end of chromosome 22 which is the site of anomalies.
Concretely, “Sohan has no autonomy, neither for meals, which are mixed, nor to satisfy essential needs,” explains his father Frédéric. Sohan made his first sound at 6 months old. His first tears date from March 2023. On the other hand, he smiles regularly.
“Thanks to the presence of physiotherapists and incentives in all forms, Sohan can now sit up in bed longer; he can hold on to stand up,” his dad emphasizes.
There are reportedly 1,500 cases of “22 Q Ter” identified worldwide. It is therefore a so-called “orphan” pathology, somewhat neglected by genetic research at present. However, there is a French association for Phelan-McDermid syndrome. And locally, this association “For the smile of Sohan” the aptly named…

Furthermore, Séverine spared no effort by organizing a fair this year on a beautiful summer Sunday in the store's parking lot, and by soliciting the brand's suppliers to provide a raffle with interesting prizes. His latest initiative was a “donation at checkout by customers”. In addition, a can collection point has been installed in the store hall, a hall often made available for the association.

Moreover many other associations also organized events this year to collect money donated to the association “For the smiles of Sohan”.

Sohan is surrounded by four reckless bikers William Galindo, Vanessa Heude, David Etienne, and Dylan Corot ©MF

A new car on December 28

With the money raised, Sohan's parents must buy a second-hand adapted vehicle, between €25,000 and €30,000.

“The car is reserved, we will pick it up on Saturday,” Frédéric Delamare announced to us on this subject last week.

This type of vehicle will allow Sohan to travel in a properly secured wheelchair. Sohan is in a fixed shellwhich therefore cannot bend. For example, to go shopping during Christmas, you have to dismantle the chair each time (weight 70 kg empty) which is only possible two or three times per outing. The use of a folding chair is therefore not possible.

Meeting between Sohan and Arnaud, actor of the film: A little something extra — Sohan and his father Frédéric Delamare met Arnaud Toupense on September 29, actor in the Artus film Un p'tit truc en plus, at the gathering of old and exceptional vehicles in Margon (Hérault) where Sohan and his family were invited . ©Photo Association For the smiles of Sohan

Christelle Hans, teacher at the Saint-Ouen high school in Pont-Audemer, gave new impetus to the association this year. Thanks to the investment of its students, the number of empty can collection points has increased. This collection is similar to that of yellow coins. It takes 60 cans to make one kilo, and the kilo is bought for around €10 by a Bernay scrap dealer.

Final year students also focused their educational project on the study of association, a project presented during the baccalaureate exam. There were dozens of initiatives from associations and volunteer groups this year.

From our correspondent Monique Fisch

Find out more: see the Facebook page For Sohan’s smiles

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