In Caouënnec-Lanvézéac, little Emmy suffered, since birth, from Woree syndrome, a devastating rare genetic disease caused by mutations in the WWOX gene. A very rare disease which only affects around sixty children worldwide. She died at the age of 15.
In 2020, his mother, Gwenaëlle Rousseau, told us about her fight to raise funds for medical research into this genetic disease. At the time, the lifespan with this syndrome was only four years. “But there is hope,” she confided. Research from around the world has come together to find a cure. Clinical tests on mice have improved several abnormalities including epilepsy and muscle deficiencies. If the scientists’ results are validated, authorization for clinical testing on children may be requested.”
Emmy’s Dreams in support
In Caouënnec-Lanvézéac, the Les Rêves d’Emmy association was created in 2015 to help the family cope with everyday difficulties and improve the living conditions of little Emmy by organizing donation drives. It contributed in particular to the purchase of medical or educational equipment, the implementation of activities, facilities or even the training of those around them. On their Facebook page, its members announced his death on Wednesday January 31.
A final Emmy will be returned on Saturday, January 4, at 10 a.m., at the Tavéac funeral home, in Begard.
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