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<div>Bonjour, 

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<div>Notre père est malheureusement atteint d’une maladie rare neurodégénérative et il lui reste seulement quelques mois à vivre. Nous avons commencé à voir des symptômes apparaître en avril/mai 2023. D’abord, nous croyions que c’était lié au stress, car il vivait déjà beaucoup d’épreuves, mais le tout a dégénéré très rapidement. En mi-juillet, d’autres symptômes plus flagrants sont apparus. Nous avons alors essayé qu’il soit vu rapidement afin de passer une IRM, mais l’attente était de 2-3 mois, donc nous avons dû nous tourner vers le privé. Nous sommes alors retournés à l’urgence et avec les résultats, il a été pris en charge plus rapidement. Il a reçu plusieurs tests et après 2 semaines, le diagnostic est tombé. Il est atteint de la maladie Creutzfeldt-Jakob. Une personne sur 1 million reçoit ce diagnostic chaque année. Nous sommes tous sous le choc et dévastés de la nouvelle, mais nous devons agir rapidement pour lui offrir le mieux pour sa fin de vie, car on ne sait pas s’il lui reste 2 mois ou bien 6 mois à vivre. Le pronostic donné par les médecins est cependant très court. 

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<div>Notre père est un homme au grand cœur qui a toujours été là pour sa famille. Cela fait aussi plus de 30 ans qu’il est enseignant et il lui restait seulement deux ou trois ans avant la retraite. Il a toujours pris grand soin de nous et des autres et nous souhaitons lui retourner la pareille. Malheureusement, les nombreux rendez-vous à l’hôpital et absences au travail ont engendré des coûts. Il vient d’avoir son congé d’hôpital, puis selon les recommandations des médecins, il doit être absolument accompagné 24h/24 par un professionnel. Un proche aidant n’est pas suffisant dans son cas, donc nous devons engager quelqu’un du privé pour le faire en plus de s’absenter au travail pour être présent dans ses derniers moments de vie. Son souhait est de passer le plus de temps possible avec ses proches et il ne veut pas être placé à un endroit où il sera malheureux pour sa fin de vie et au privé, les coûts sont dispendieux. Nous demandons rarement de l’aide, mais tout cela engendre de grosses dépenses financières imprévues et nous voulons vraiment que notre père soit bien, car c’est ce qu’il mérite. Mon père a toujours été quelqu’un de très simple et bienveillant. Il veut vivre chaque petit moment paisiblement pendant qu’il peut encore le faire. Selon les spécialistes, il lui reste environ un mois à avoir une qualité de vie suffisante. Donc, pour le mois de septembre, nous voulons lui faire vivre des moments magiques. Nous avons la chance de le célébrer avant son départ et nous voulons le faire. Puisque nous ne savons pas la durée de vie, le reste de l’argent accumulé sera donné à la fondation pour les recherches sur la maladie Creutzfeldt-Jakob, car pour l’instant, il n’y a pas de traitement pour cette maladie. Merci de nous aider dans cette épreuve difficile, nous vous en serons éternellement reconnaissants.

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<div>Ses 2 filles et sa femme ♥️

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<div>Plusieurs détails sur la maladie dans ce lien-ci :
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<div><span><a href="https://ressourcessante.salutbonjour.ca/condition/getcondition/maladie-de-creutzfeldt-jakob" target="_blank" class="" rel="nofollow noopener noreferrer">https://ressourcessante.salutbonjour.ca/condition/getcondition/maladie-de-creutzfeldt-jakob</a></span><br />
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<div>We recently learned that our father has a rare neurodegenerative disease called Creutzfeldt-Jakob. As told by the specialists, his lifespan is unfortunately of a couple months. We began noticing a few symptoms by the end of April 2023. At first, we thought that it was the stress that our father went through this year that caused all the symptoms, but his health condition rapidly decreased. By mid-July, the other symptoms appearing raised our concerns even more. We then tried seeking the help of a specialist as soon as we could, but the waiting for an MRI scan was too long (2-3 months) so we had to go to a private clinic. We then came back to the emergency room with the result of the scan and our father was taken in charge more rapidly. He received several tests and after two weeks, the diagnostic for Creutzfeldt-Jakob was confirmed by the neurologists. One person on a million is diagnosed each year with this disease. Unfortunately, no treatment exists for now for this disease. We are in shock and devastated by the news, but we have to find a fast solution to fulfill our father’s last wishes. He has a heart of gold and has always been very down to earth and wishing the best for his entourage. He has been teaching for approximately 30 years and was about to retire in 2 to 3 years. We would like to return the favor and offer him some beautiful last moments surrounded by his loved ones. When we asked him what he wanted the most, that’s what he told us. Unfortunately, as recommended by the specialists, our father needs assistance 24h/24 and cannot be left without surveillance so we would have to hire someone from the private sector. A caregiver from his family is not sufficient in his case. Of course we also want to be by his side for his last moments. We rarely ask for help, but since all this care requires a lot of unplanned expenses, we would like to ask for your generosity. We have the chance to celebrate our father before he leaves so we want to offer him comfort and lasting memories. Since we don’t know exactly the time he has left, (2 to 6 months ) the money remaining would be given to research on the Creutzfeld-Jakob disease. Thank you in advance and we are very grateful for any help that can be given.

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<div>His 2 daughters and wife ♥️

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Daniele J. Proulx

Julie Hubert

Geneviève Cantin

Lorinne Gilbert

Caroline St-Germain

Katerine Bourget

Geneviève Larivière

Stephanie Goulet

Rosie Brunet

Annie Garceau

Micheline Morneau

Gabriel Marquis

Michael Litresits

Anonymous

Josiane Lachapelle

Danou Dumoulin

Sébastien Tremblay

Cariane Driad

Tonino Calandrini

Atteint d’une maladie rare neurodégénérative CJD

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Atteint d’une maladie rare neurodégénérative CJD

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