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<div><strong>Marius a 5 ans.</strong>
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<div>C’est un petit garçon vif, créatif, joyeux, mais surtout courageux, qui grandit avec une réalité bien différente de celle des autres enfants.
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<div>À seulement 6 jours de vie, notre monde s’est arrêté.
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<div>Marius a été diagnostiqué d’une <strong>maladie génétique très rare : la leucinose.</strong>
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<div>Cette maladie empêche son corps d’éliminer correctement certains acides aminés (comme la leucine) qui se trouve être dans les protéines. Toutes les protéines sont donc proscrites de son alimentation, car celle-ci s’accumulent dans son organisme et atteignent son cerveau, pouvant provoquer des troubles neurologiques graves, le plonger dans le coma, et même mettre sa vie en danger.
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<div>Depuis ce jour, tout est devenu plus fragile.
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<div>Le quotidien de Marius est rythmé par un régime alimentaire extrêmement strict, des prises de sang chaque semaine, et des hospitalisations régulières à Montpellier.
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<div>À chaque maladie, chaque fièvre, chaque moment de fatigue… le risque est là.
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<div>Et à chaque fois, tout s’arrête.
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<div>Nous devons quitter notre travail, notre maison, et laisser sa petite sœur pour rester à son chevet, avec cette peur constante que la situation bascule.
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<div>Après 5 années de combat, une seule solution existe aujourd’hui pour lui offrir une autre vie :<strong>la greffe du foie.</strong>
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<div>Cette greffe aura lieu à l<strong>’Hôpital Necker-Enfants malades à Paris</strong>.
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<div>Nous entrons désormais dans une période d’attente.
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<div>Nous pouvons être appelés à tout moment, de jour comme de nuit, pour partir immédiatement.
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<div>Nous devrons alors mettre notre vie entre parenthèses pour être à ses côtés à chaque instant.
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<div>Notre quotidien sera rythmé par les allers-retours entre Paris et Montpellier, l’incertitude, les contraintes… mais surtout par l’espoir de le voir grandir et vivre plus librement.
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<div>Nous sommes vignerons près de Montpellier, et cette période va profondément bouleverser notre vie, entre déplacements, arrêt de travail et organisation familiale très difficile.
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<div>Cette cagnotte a pour but de nous permettre de rester auprès de Marius le plus possible, de faire face aux frais liés à cette période, et de traverser cette épreuve en étant pleinement concentrés sur l’essentiel :<strong> lui.</strong>
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<div>Au-delà de notre situation, nous souhaitons également que cette démarche puisse servir à d’autres.
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<div>Si la cagnotte dépasse les besoins liés à la greffe de Marius, une partie sera reversée au CHU de Montpellier, au service de neuropédiatrie qui le suit depuis sa naissance, afin d’améliorer le quotidien des enfants hospitalisés et de leurs familles.
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<div>Chaque don, petit ou grand, est une aide précieuse.
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<div>Chaque partage est un soutien immense.
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<div>Merci du fond du cœur pour votre solidarité.
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<div>Les parents de Marius (Solenne et Olivier), Marius et Alice (sa petit soeur)
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<div><strong>Marius is 5 years old.</strong>
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<div>He is a lively, creative, cheerful little boy—but above all, he is incredibly brave. Every day, he faces challenges that are very different from those of other children.
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<div>When Marius was just six days old, our world came to a standstill.
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<div>He was diagnosed with a very rare genetic disorder called Maple Syrup Urine Disease (MSUD).
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<div>This condition prevents his body from properly breaking down certain amino acids, such as leucine, which are found in protein. As a result, he must avoid virtually all natural proteins, as they build up in his body and can damage his brain, leading to severe neurological complications, coma, or even becoming life-threatening.
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<div>From that day on, everything became more fragile.
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<div>Marius's daily life revolves around an extremely strict diet, weekly blood tests, and regular hospital stays in Montpellier.
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<div>Every illness, every fever, every moment of exhaustion carries a risk.
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<div>And each time, everything stops.
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<div>We have to leave our work, our home, and his little sister behind so that we can stay by his side, always fearing that his condition could suddenly worsen.
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<div>After five years of fighting, there is now only one option that can offer Marius a different future: a liver transplant.
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<div>His transplant will take place at Necker-Enfants Malades Hospital in Paris.
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<div>We are now entering the waiting phase.
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<div>We could receive the call at any time—day or night—and will have to leave immediately.
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<div>From that moment on, our lives will be put on hold so we can remain by his side every step of the way. Our daily routine will revolve around constant travel between Paris and Montpellier, uncertainty, countless practical challenges, but above all, the hope of seeing Marius grow up and finally enjoy a life with greater freedom.
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<div>We are winegrowers near Montpellier, and this period will profoundly disrupt our lives through repeated travel, time away from work, and the enormous challenge of organizing our family life.
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<div>This fundraiser has been created to help us remain with Marius as much as possible, cover the many expenses related to this difficult period, and allow us to focus entirely on what matters most: <strong>our son</strong>.
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<div>Beyond helping our family, we also hope this initiative can benefit others.
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<div>If the funds raised exceed what is needed for Marius's transplant and recovery, a portion will be donated to the Neuropediatrics Department at Montpellier University Hospital, which has cared for him since birth, to help improve the daily lives of hospitalized children and their families.
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<div>Every donation, no matter the amount, makes a real difference.
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<div>Every share of this fundraiser is an invaluable act of support.
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<div>From the bottom of our hearts, thank you for your kindness, generosity, and solidarity.
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<div>Marius's parents, Solenne and Olivier,
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<div>Marius, and his little sister Alice
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Baptiste GARCIA

Martine PINEDE

Rémy Paulet

STEPHANE CABEZON

PHILIPPE ALLEAUME

Marianne PERROT

JACQUELINE VAURS

Rose Einhorn

louise duby

Cebrian Richard

Raoul Faure

Valérie CAHÉ-SOLLIER

Anonymous

sebastien escobar

Charles Caillaud

Didier JULIA

severine le clay

garcia juan

Pour que Marius puisse dire Au-revoir à la Leucinose

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Platform is iOS

Android

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Platform is iOS v11.2.0 and above

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Pour que Marius puisse dire Au-revoir à la Leucinose

Still €3,416 to go. Help us build momentum.