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<div>(Version française plus bas)
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<div>There are things a parent is never ready to face.
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<div>Watching your son slowly lose his sight is one of them.
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<div>Benjamin has retinitis pigmentosa, a genetic condition that gradually narrows his field of vision until it leads to blindness. It was hiding in our genes, and none of us knew. He was diagnosed seven years ago, and since then the disease has kept moving forward. This past year alone, he lost another 15% of his visual field — he's now down to about 20 degrees of vision. Picture looking at the world through two toilet paper rolls.
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<div>There's no treatment right now that can stop this disease in its tracks. So we're not writing this to raise money for a cure. We're writing it because we want to help him fill the time he has left with as much life, color, and beauty as possible.
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<div>His sight is fading, and so is his independence. Just walking down the street and dodging other pedestrians has become a daily challenge.
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<div>And here's the part that hurts the most: watching his world shrink. Fast. Too fast.
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<div>Benjamin has one big dream, almost an obsession: to see as many landscapes as he possibly can before his eyes stop letting him.
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<div>Crossing mountains. Following coastlines. Sleeping under the stars. Meeting people. Discovering places not through a car window or a plane window, but from the inside. Actually living the journey.
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<div>The problem is, he can't ride those roads alone anymore. His eyesight no longer allows him to cycle safely on his own.
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<div>So an idea came to us.
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<div>A tandem bike.
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<div>On a tandem, you move forward together. You pedal together. You learn to trust each other, to communicate, to share the effort just as much as the scenery.
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<div>This bike would let him keep traveling despite the disease, with the people who matter most to him by his side : family, friends, and anyone else who wants to share a stretch of road with him.
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<div>This isn't coming out of nowhere. Four years ago, Benjamin started his own foundation, <a href="https://horizonusherfoundation.org" target="_blank" rel="noreferrer noopener">Horizon Usher Foundation</a>, to support research into retinitis pigmentosa and related conditions like Usher syndrome.
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<div>He's already taken on big challenges, including sailing across the Atlantic — one of his lifelong dreams.
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<div>These tandem trips would be part of that same spirit: keep chasing his dreams, share them with others, and raise awareness along the way.
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<div>The first trip is already planned: crossing Morocco by tandem, sticking to small back roads, discovering the country from the inside, at the pace of chance encounters and passing kilometers. And this would only be the beginning. The idea is to keep going, country after country, for as long as his vision still lets him take it all in.
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<div>Here's the catch: a real touring tandem, built to handle thousands of kilometers, isn't cheap. Add in the panniers, the gear, all the equipment needed for the road, and it's more than we can cover on our own.
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<div>So we're giving this a shot.
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<div><strong>What will this fundraiser support?</strong>
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<div>Beyond the tandem itself, this fundraiser will help bring to life a project that Benjamin has been dreaming of building for a long time.
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<div>Every contribution will help cover everything needed to make these journeys possible: the equipment, preparation, travel, logistics, but also the creation of photos, videos and stories that will allow him to share these adventures and continue raising awareness about retinitis pigmentosa through his foundation.
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<div>Our hope is that every kilometer traveled will serve two purposes: allowing Benjamin to live this dream, and helping more people discover a disease that is still far too unknown.
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<div><strong>--</strong>
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<div>If this story speaks to you and you'd like to help, even just a few euros would mean the world to us. Every contribution gets us one step closer to that first departure.
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<div>And if you can't give right now, sharing this fundraiser would help just as much.
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<div>We'd be so happy if, years from now, when our son can no longer see these landscapes, he can at least say he got the chance to live them.
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<div>Thank you, truly, from all of us.
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<div>Gérald &amp; Valérie
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<div>_______
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<div>Il y a des choses qu’un parent n’est jamais prêt à vivre.
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<div>Voir son fils perdre peu à peu la vue en fait partie.
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<div>Benjamin est atteint d'une rétinite pigmentaire, une maladie génétique qui réduit progressivement son champ visuel jusqu’à la cécité. C’était caché dans nos gènes, sans qu’on le sache. Le diagnostic est tombé il y a sept ans. Et depuis, la maladie suit malheureusement son cours. En un an, il a encore perdu environ 15 % de son champ visuel, ce qui lui laisse aujourd’hui autour de 20 degrés de vision. C’est comme voir le monde à travers deux rouleaux de papier toilette…
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<div>Il n’existe actuellement aucun traitement capable d’arrêter la progression de la maladie. C’est pourquoi nous n’écrivons pas ces lignes pour financer un traitement médical, mais pour essayer de lui offrir le temps qu’il reste le plus riche, le plus vivant et le plus beau possible.
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<div>Aujourd’hui, sa vue diminue mais aussi son autonomie. Ne serait-ce que marcher dans la rue et éviter les passants est devenu un défi de son quotidien.
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<div>Et ce qui nous fait le plus mal, c’est ça : voir son monde rétrécir. Vite. Trop vite.
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<div>Benjamin a un rêve immense, presque une obsession : voir le plus de paysages possible avant que ses yeux ne le lui permettent plus.
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<div>Traverser des montagnes. Longer des côtes. Dormir sous les étoiles. Rencontrer des gens. Découvrir des lieux non pas à travers une vitre de voiture ou d’avion, mais en étant dedans, en vivant le voyage.
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<div>Mais aujourd’hui, il ne peut plus parcourir ces routes seul. Sa vision ne lui permet plus de rouler en sécurité.
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<div>Alors une idée nous est venue.
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<div>Un tandem.
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<div>Sur un tandem, on avance ensemble. On pédale ensemble. On apprend à se faire confiance, à communiquer, à partager les efforts autant que les paysages.
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<div>Ce vélo lui permettrait de continuer à voyager malgré la maladie, accompagné par les personnes qui comptent le plus pour lui : sa famille, ses amis, et celles et ceux qui voudront partager un bout de route avec lui.
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<div>Ce projet ne sort pas de nulle part. Il y a quatre ans, Benjamin a créé sa fondation <a href="https://horizonusherfoundation.org" target="_blank" rel="noreferrer noopener">Horizon Usher Foundation</a> pour soutenir la recherche sur la rétinite pigmentaire et les maladies associées comme le syndrome d’Usher.
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<div>Il a déjà mené des projets importants, notamment une traversée de l’Atlantique à la voile, un de ses grands rêves.
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<div>Aujourd’hui, ces voyages en tandem s’inscriraient dans la même démarche : continuer à vivre ses rêves, les partager, et sensibiliser.
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<div>Le premier projet est déjà tout vu : traverser le Maroc en tandem, par les petites routes, pour découvrir le pays de l’intérieur, au rythme des rencontres et des kilomètres. Et ce ne serait que le début.
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<div>L’idée serait de continuer à voyager, pays après pays, tant que sa vision lui permet encore d’en profiter.
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<div>Mais la réalité, c’est qu’un vrai tandem de voyage, capable de parcourir des milliers de kilomètres, représente un coût important. Avec les sacoches, le matériel et tout l’équipement nécessaire, c’est un projet que nous ne pouvons pas financer seuls.
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<div>Alors nous tentons notre chance ici.
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<div><strong>--</strong>
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<div><strong>À quoi servira cette cagnotte ?</strong>
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<div>Au-delà du tandem, cette cagnotte permettra de donner vie à un projet que Benjamin rêve de construire depuis longtemps.
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<div>Chaque contribution aidera à financer tout ce qui rendra ces voyages possibles : le matériel, la préparation, les déplacements, la logistique, mais aussi la création des photos, vidéos et récits qui permettront de partager ces aventures et de continuer à sensibiliser le public à la rétinite pigmentaire à travers sa fondation.
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<div>Notre souhait est que chaque kilomètre parcouru serve à la fois à réaliser son rêve et à faire connaître cette maladie encore trop peu connue.
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<div><strong>--</strong>
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<div>Si cette aventure vous parle et que vous avez envie d’y contribuer, même avec quelques euros, ce sera déjà énorme. Chaque participation nous rapprochera un peu plus de ce premier départ.
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<div>Et si vous ne pouvez pas participer, partager cette cagnotte nous aidera tout autant.
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<div>Nous serions tellement heureux que, dans quelques années, quand notre fils ne pourra plus voir ces paysages, il puisse au moins se dire qu’il a eu la chance de les vivre.
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<div>Merci à tous, sincèrement.
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<div>Gérald &amp; Valérie
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<div><br />
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A Tandem for Benjamin: One Last Journey to See the World

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A Tandem for Benjamin: One Last Journey to See the World

Still €7,413 to go. Help us build momentum.