Margaux - Née pour Briller

Purpose of the association

To raise awareness of Margaux’s condition, which is a rare genetic disorder (severe, drug-resistant epileptic encephalopathy with a mutation in the ATP1A3 gene), and its impact on daily life; To create a hub via a website (which does not currently exist) for parents dealing with the same condition; To raise awareness and improve attitudes towards disability through individual or collective initiatives; To make it easier for our multi-disabled daughter, Margaux, born in 2017, to get about and manage her daily life, through the purchase of materials (educational, medical, stimulatory, etc.) and specialised, adapted equipment; Purchasing an adapted car would enable the family to transport Margaux; Carry out modifications to the family home; Fund her alternative therapies in France and abroad, as well as transport and accommodation for her and her carers; And also her care, which would help improve her daily life; To raise funds by organising cultural and sporting events so that we can purchase the necessary equipment and enable our daughter Margaux to benefit from alternative therapies;

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