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À 5 ans, Maxime était un garçon normal et très sportif. Tennis, planche à neige, karaté, natation, hockey, soccer, vélo, trottinette, patin... Maxime aimait bouger et il était très passionné jusqu'au moment où tout à changé.
En quelques mois, des problèmes d'équilibre, de motricité et de raideurs importantes (spasticité) aux jambes sont apparues suite à une fièvre et une infection de nature inconnue. Pris en charge par l'Hôpital Ste-Justine, Maxime a passé une batterie de tests : scan cérébral, prises de sang multiples, IRM, ponctions lombaires et autres. Une équipe de spécialistes tentent de trouver ce qui ne fonctionne pas chez Maxime. Un an plus tard, nous ne savons toujours pas ce qui affecte Maxime et comment sa situation peut évoluer. Des maladies génétiques dégénératives sont suspectées et nous sommes démunis devant un avenir incertain.
Au début de la maladie, Maxime était capable de marcher de manière erratique des distances de l'ordre de 2 à 3 mètres sans soutien. Aujourd'hui, il est incapable de se déplacer sans sa marchette et notre modeste maison n'est pas adaptée en conséquence.
Au quotidien, Maxime rencontre plusieurs embuches avec sa marchette. Les escaliers extérieurs sont un obstacle majeur pour lui. Il ne va plus dans la cuisine puisqu'il n'a pas assez de place pour y circuler. Sa marchette ne rentre pas dans les salles de bain du rez-de-chaussée et du sous-sol. Les portes intérieures sont trop étroites et Maxime les abîme avec sa marchette ou abandonne sa marchette pour poursuivre sa route à quatre-pattes.
Comme parents, nous désirons que Maxime se sente le plus normal possible et puisse suivre son jeune frère et nous-mêmes partout où il désire dans la maison. C'est pourquoi nous avons entrepris le projet d'adapter notre maison pour ses besoins afin de rendre son quotidien un peu plus normal. Merci énormément pour votre support dans cet objectif pour faciliter la vie de Maxime jour après jour. Merci de partager.
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At five years old Maxime was a normal child and very athletic. He enjoyed tennis, snowboarding, karate, swimming, hockey, soccer, biking, and skating. He was very passionate about sports until one day everything changed.
Within a few months his balance and motorskills were rapidly diminishing. Following an unknown fever and infection, spasticity appeared in his legs. A team of specialists at Sainte-Justine Hospital are trying to find the cause of all these problems with Maxime. A year later and we still don't know why he is being affected by these disabilating conditions. Also, we are in disarray and are worried about the evolution that these conditions will cause in the future. Degenerative genetic diseases are suspected.
The first month with the disease, he was able to walk erratically for aproximately 2 to 3 meters without supoport. Today, he is unable to move without his walker and our home is not suitable for Maxime's needs.
In everyday life, Maxime has met several difficulties with his walker. Exterior stairs are a major obstacle for him. He cannot go to the kitchen because of the inadaquit space for him to maneuver in. Also, his walker does not fit in the bathrooms. The interior doors are too narrow and of course because of his debilitationg motor skills and balance he cannot navigate through tight spaces without banging and scratching both sides of the door he is trying to enter. His only option is to leave his walker behind and of course needs major assistance to access these areas.
As his parents, we want Maxime to be able to live as normal a life as possible being able to follow his brother or ourselves anywhere in the house that he chooses to be. For those reasons we are undertaking the project of adapting our home for Maxime's needs. Therefore we are asking for your help in this endeavor and would appreciate any donation that you could give.
Thank you in advance for your contribution in assisting us in our goal of making Maxime's everyday life easier.
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