Solène and Margaux are twin sisters. Margaux has leukodystrophy. She has never been able to speak or walk. In spite of Margaux’s illness, Solène loves spending time with and playing with her sister. Today, Margaux’s parents have to face not only their child’s illness, but also the difficult conditions of confinement: the increased anxiety due to the fragility of children with leukodystrophy, the fear of shortage of medicines, the lack of medical and paramedical care…
“Leukodystrophy is a constant struggle for us, but what matters is to be able to look after Margaux, to do things together as a family and to make memories”.
Leukodystrophies are rare, neurodegenerative diseases that lead to the loss of all vital functions: vision, locomotion, hearing, speech, memory.For 28 years, ELA has been supporting families, providing help, relief, and respite.
Help ELA to continue helping families. All donations count. We need you now more than ever.