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<div>Hello, we are Wisal and Azeddine, parents of our beautiful 2½-year-old boy, Samy.
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<div>A few months ago, our world shattered when Samy was diagnosed with LGMD2C, a rare genetic form of muscular dystrophy that slowly destroys the muscles. Without new treatments, children gradually lose the ability to run… then walk… then stand… and sometimes even breathe on their own.
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<div>We had never heard of this disease before.
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<div>We felt lost. Alone.
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<div>Trying to understand how to save our son.
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<div>No parent is ever ready to face this kind of future for their child.
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<div>But there is real hope. Scientists are working on gene therapies designed to replace the faulty gene and stop the damage before it becomes irreversible. Early research and clinical progress show that a treatment may be possible.
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<div>However, for ultra-rare diseases like LGMD2C, progress depends heavily on funding.
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<div>Without enough financial support, research can slow down for years, and in some cases, promising projects may be delayed indefinitely or even stopped.
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<div>For families like ours, this is terrifying, because time is something our son does not have.
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<div>For Samy, time is muscle.
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<div>The longer he stays strong, the better his chances if the treatment arrives in time.
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/101323301_1775008945738041_r.jpeg" width="100%" />
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<div>That is why we are raising funds primarily to give Samy the best possible chance to benefit from gene therapy treatment, and to support the research that could make this therapy available in time for him.
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<div>Donations will mainly help:
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<div>• Prepare for future treatment opportunities, including specialized evaluations, consultations, and trial-related steps
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<div>• Cover costs related to accessing gene therapy if Samy becomes eligible
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<div>• Support gene therapy research for LGMD2C so development can continue without delays
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<div>• Help accelerate studies and clinical work so children like Samy can receive treatment as early as possible
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<div>Our goal is not only to support research,
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<div>it is to make sure Samy has a real chance to receive the treatment if it becomes available.
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<div>For rare diseases, lack of funding can slow progress or even stop it completely, and for children like Samy, delays can mean losing the opportunity to benefit from a therapy.
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<div>That is why we are asking for help now.
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<div>Our goal: $800,000 CAD.
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<div>Research for rare diseases is extremely costly, and without strong financial support, breakthroughs can take much longer, sometimes too long for children like Samy.
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<div>We will keep pushing forward for as long as it takes, because giving up is not an option when it comes to our child’s future.
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<div>We never imagined we would be in a position where we need to ask for help like this.
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<div>But as parents, we would give anything to see Samy keep running, climbing into our arms, and growing up laughing with his brothers.
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/101323301_1775009254227290_r.jpeg" width="100%" />
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<div>We are not asking for comfort.
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<div>We are not asking for luxury.
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<div>We are asking for hope.
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<div>For research that could change everything.
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<div>For a future where Samy keeps being Samy — full of giggles, energy, and love.
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/101323301_1775009013115710_r.jpeg" width="100%" />
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<div>Every donation moves research forward.
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<div>Every share can reach the right person.
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<div>Every bit of support gives us strength to keep fighting for our son.
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<div>If you cannot donate today, please share this page.
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<div>One share can make the difference.
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<div>From the bottom of our hearts, thank you.
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<div>Our feature on TVA Gatineau News:
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<div><a href="https://tvagatineau.ca/le-combat-dune-famille-pour-offrir-une-meilleure-vie-a-leur-fils-atteint-dune-maladie-neuromusculaire-genetique-extremement-rare/" target="_blank" rel="noreferrer noopener">A family's fight to give their son a better life w</a>hile he battles an extremely rare genetic neuromuscular disease.
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<div><a href="https://www.hopeforsamy.ca/" target="_blank" rel="noreferrer noopener">Our Hope for Samy Foundation</a>
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<div>Every visit, share, donation, and message of support brings us one step closer to our goal: giving Samy a chance to access a treatment that could change his life. 
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<div>Wisal &amp; Azeddine (Samy’s parents) ❤️
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<div>Nepean, Ontario, Canada
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<div>Bonjour, nous sommes Wisal et Azeddine, les parents de notre magnifique petit garçon de 2 ans et demi, Samy.
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/101323301_1775009595694494_r.jpeg" width="100%" />
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<div>Il y a quelques mois, notre monde s’est effondré lorsque Samy a reçu un diagnostic de LGMD2C, une forme génétique rare de dystrophie musculaire qui détruit progressivement les muscles. Sans nouveaux traitements, les enfants perdent peu à peu la capacité de courir… puis de marcher… puis de se tenir debout… et parfois même de respirer seuls.
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<div>Nous n’avions jamais entendu parler de cette maladie auparavant.
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<div>Nous nous sommes sentis perdus. Seuls.
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<div>À essayer de comprendre comment sauver notre fils.
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<div>Aucun parent n’est prêt à faire face à un tel avenir pour son enfant.
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<div>Mais il y a un véritable espoir. Des scientifiques travaillent sur des thérapies géniques visant à remplacer le gène défectueux et à stopper les dommages avant qu’ils ne deviennent irréversibles. Les premières recherches et les progrès cliniques montrent qu’un traitement pourrait être possible.
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<div>Cependant, pour les maladies ultra-rares comme la LGMD2C, les progrès dépendent fortement du financement.
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<div>Sans soutien financier suffisant, la recherche peut ralentir pendant des années, et dans certains cas, des projets prometteurs peuvent être retardés indéfiniment, voire arrêtés.
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<div>Pour des familles comme la nôtre, c’est terrifiant, car le temps est une chose que notre fils n’a pas.
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<div>Pour Samy, le temps, c’est du muscle.
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<div>Plus il conserve ses capacités le plus longtemps possible, meilleures seront ses chances si le traitement arrive à temps.
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/101323301_1775009644964985_r.jpeg" width="100%" />
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<div>C’est pourquoi nous recueillons des fonds avant tout pour donner à Samy la meilleure chance possible de bénéficier d’une thérapie génique, et pour soutenir la recherche qui pourrait rendre ce traitement accessible à temps pour lui.
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<div>Les dons serviront principalement à :
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<div>• Se préparer aux futures opportunités de traitement, y compris les évaluations spécialisées, les consultations et les démarches liées aux essais cliniques
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<div>• Couvrir les coûts liés à l’accès à la thérapie génique si Samy devient admissible
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<div>• Soutenir la recherche sur la thérapie génique pour la LGMD2C afin que son développement se poursuive sans retard
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<div>• Aider à accélérer les études et les travaux cliniques pour que les enfants comme Samy puissent recevoir un traitement le plus tôt possible
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<div>Notre objectif n’est pas seulement de soutenir la recherche,
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<div>mais de nous assurer que Samy ait une véritable chance de recevoir le traitement s’il devient disponible.
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<div>Pour les maladies rares, le manque de financement peut ralentir les progrès, voire les arrêter complètement. Et pour des enfants comme Samy, les retards peuvent signifier perdre l’opportunité de bénéficier d’une thérapie.
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<div>C’est pourquoi nous demandons de l’aide dès maintenant.
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<div>Notre objectif : 800 000 $ CAD.
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<div>La recherche sur les maladies rares est extrêmement coûteuse, et sans un soutien financier solide, les avancées peuvent prendre beaucoup plus de temps — parfois trop pour des enfants comme Samy.
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<div>Nous continuerons à nous battre aussi longtemps qu’il le faudra, car abandonner n’est pas une option lorsqu’il s’agit de l’avenir de notre enfant.
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<div>Nous n’aurions jamais imaginé devoir demander de l’aide de cette manière.
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<div>Mais en tant que parents, nous ferions tout pour voir Samy continuer à courir, se jeter dans nos bras et grandir en riant avec ses frères.
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/101323301_1775009150378578_r.jpeg" width="100%" />
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<div>Nous ne demandons pas du confort.
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<div>Nous ne demandons pas du luxe.
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<div>Nous demandons de l’espoir.
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<div>Pour une recherche qui pourrait tout changer.
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<div>Pour un avenir où Samy reste Samy — plein de rires, d’énergie et d’amour.
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/101323301_1775009703887953_r.jpeg" width="100%" />
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<div>Chaque don fait avancer la recherche.
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<div>Chaque partage peut atteindre la bonne personne.
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<div>Chaque geste de soutien nous donne la force de continuer à nous battre pour notre fils.
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<div>Si vous ne pouvez pas faire un don aujourd’hui, merci de partager cette page.
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<div>Un simple partage peut faire toute la différence.
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<div>Du fond du cœur, merci.
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<div>Notre passage aux nouvelles de TVA- Gatineau :
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<div><a href="https://tvagatineau.ca/le-combat-dune-famille-pour-offrir-une-meilleure-vie-a-leur-fils-atteint-dune-maladie-neuromusculaire-genetique-extremement-rare/" target="_blank" rel="noreferrer noopener">Le combat d'une famille pour offrir une meilleure</a> vie à leur fils, atteint d'une maladie neuromusculaire génétique extrêmement rare - TVA Gatineau.
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<div>Notre site web de la <a href="https://fr-ca.hopeforsamy.ca/" target="_blank" rel="noreferrer noopener">fondation Espoir pour Samy</a>
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<div>Chaque visite, partage, don ou mot d’encouragement nous rapproche de notre objectif : offrir à Samy une chance d’accéder à un traitement qui pourrait changer sa vie. 
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<div>Wisal &amp; Azeddine (parents de Samy) ❤️
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<div>Nepean, Ontario, Canada
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</div>

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Save Samy's muscles before it's too late. Help him reach GT

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Save Samy's muscles before it's too late. Help him reach GT

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