<div><strong>Help Sophie L’Homme Access Life-Altering Treatments for a Rare and Degenerative Spinal Condition</strong>
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<div>Sophie L’Homme, director of Clayoquot Sound Theatre and founder of the Tofino Jazz Festival, urgently needs a specialized cervical fusion surgery from her skull to C2 — a procedure that is unfortunately not available in Canada.
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<div>Sophie suffers from Cranio Cervical Instability (CCI), a serious condition caused by hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic disorder that affects her body’s collagen. Because of this instability, the vertebrae at the top of her neck slip against each other with even the slightest movement — something as simple as nodding yes or no. This compresses both her spinal cord/ brain stem and some major blood vessels.
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<div>She lives with debilitating head pain, blurry vision, intracranial hypertension, leg weakness, and the constant sensation that her head is not properly attached to her neck. The compression in her neck has weakened the nerve signals traveling from her brain to her arms and legs, and she now requires a cane to walk.
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<div>More recently, she has developed some unbearable intracranial hypertension due to the compression of her internal jugular veins by her C1 vertebrae. To her greatest sorrow, she cannot sing anymore as it brings the pressure in her head too high.
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<div>One of the biggest challenges is the <strong>lack of medical support in Canada</strong>; there are currently no CCI specialists in Canada. Diagnosing and properly assessing this condition requires upright dynamic imaging to observe the effects of gravity on the neck — technology that is unavailable in Canada. In other words, CCI is often missed on most laid down MRIs.
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<div>Moreso, Sophie has been sitting on a semi-urgent waitlist just to receive consultation from a neurosurgeon.
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<div>After travelling to Europe to undergo specializing imaging and nerve testing needed for surgery, doctors have confirmed her diagnosis and have recommended <strong>fusion surgery</strong> to stop the progression of the instability and prevent further neurological damage.
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<div>Unfortunately, <strong>this surgery is not available in Canada,</strong> and Sophie will be required to travel again to Europe to acess this medical procedure.
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<div>Nobody in Canada with Sophie's condition has been accepted for Out of Country funding yet to be able to pay for this life saving surgery. This is where you come in - your support brings Sophie one step closer to gaining her freedom back.
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<div>If you have ever enjoyed Sophie's choir or danced around on the Village Green during the Tofino Jazz Festival, please consider donating. Those are all projects that Sophie has had to cancel due to her deteriorating condition.
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<div>We know this community appreciates everything Sophie does to uplift everyone! Help us bring the life Sophie deserves back to her! And especially get rid of the pain that is dimming dramatically her bright shining light.
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<div>Her condition has been deteriorating rapidly, and we are hoping to help her access this surgery as soon as possible. deteriorating rapidly, and we are hoping to help her access this surgery as soon as possible. The treatment Sophie needs to receive is very rare, particular and expensive; $20,000 of the money raised has already been used for testing in Europe, and <strong>the surgery itself will cost $120,000</strong>.
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<div>Please donate if you can and share this with your friends and family.
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<div>Thank you!
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<div>Sophie L’Homme, directrice du Clayoquot Sound Theatre et fondatrice du Tofino Jazz Festival, a urgemment besoin d’une chirurgie de fusion cervicale de son crâne jusqu’à C2 — une intervention malheureusement non disponible au Canada.
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<div>Sophie souffre d’instabilité cranio-cervicale (CCI), une affection grave causée par le syndrome d’Ehlers-Danlos hypermobile (hEDS), un trouble génétique qui affecte le collagène de son corps.
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<div>En raison de cette instabilité, les vertèbres en haut de son cou glissent l’une contre l’autre au moindre mouvement — quelque chose d’aussi simple que hocher la tête pour dire oui ou non.
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<div>Cela comprime à la fois sa moelle épinière/son tronc cérébral et certaines grosses artères.
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<div>Elle vit avec des douleurs à la tête invalidantes, une vision floue, une hypertension intracrânienne, une faiblesse des jambes et la sensation constante que sa tête n'est pas correctement attachée à son cou.
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<div>La compression dans son cou a affaibli les signaux nerveux voyageant de son cerveau vers ses bras et ses jambes, et elle a désormais besoin d'une canne pour marcher.
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<div>Plus récemment, elle a développé une hypertension intracrânienne insupportable due à la compression de ses veines jugulaires internes par ses vertèbres C1. À son grand désarroi, elle ne peut plus chanter car cela fait trop augmenter la pression dans sa tête.
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<div>L'un des plus grands défis est le <strong>manque de soutien médical au Canada</strong>; il n'y a actuellement aucun spécialiste du CCI au Canada. Diagnostiquer et évaluer correctement cette condition nécessite des imageries dynamiques en position debout pour observer les effets de la gravité sur le cou — une technologie qui n'est pas disponible au Canada. En d'autres termes, le CCI est souvent manqué sur la plupart des IRM effectuées allongé.
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<div>De plus, Sophie est sur une liste d'attente semi-urgente juste pour obtenir une consultation avec un neurochirurgien.
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<div>Après avoir voyagé en Europe pour subir des examens d'imagerie spécialisés et des tests nerveux nécessaires pour la chirurgie, les médecins ont confirmé son diagnostic et ont recommandé une <strong>chirurgie de fusion</strong> pour arrêter la progression de l'instabilité et prévenir de nouveaux dommages neurologiques.
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<div>Malheureusement, <strong>cette chirurgie n'est pas disponible au Canada</strong>, et Sophie devra de nouveau se rendre en Europe pour accéder à cette procédure médicale.
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<div>Personne au Canada avec l'état de Sophie n'a encore été accepté pour un financement hors du pays afin de pouvoir payer cette chirurgie qui sauve des vies. C'est là que vous intervenez - votre soutien rapproche Sophie d'un pas de la reconquête de sa liberté.
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<div>Si vous avez déjà apprécié le chœur de Sophie ou dansé sur la pelouse du Village Green lors du Festival de jazz de Tofino, considerez faire un don. Tous ces projets ont dû être annulés par Sophie en raison de l'aggravation de son état.
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<div>Nous savons que cette communauté apprécie tout ce que Sophie fait pour élever le moral de chacun ! Aidez-nous à lui redonner la vie qu'elle mérite ! Et surtout, à éliminer la douleur qui ternit considérablement sa lumière éclatante.
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<div>Son état se détériore rapidement, et nous espérons l'aider à accéder à cette chirurgie dès que possible. Le traitement que Sophie doit recevoir est très rare, particulier et coûteux; $20,000 des fonds collectés ont déjà été utilisés pour les tests en Europe, et la chirurgie elle-même coûtera $120,000.
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<div>Veuillez faire un don si vous le pouvez, et partagez cela avec vos amis et votre famille.
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<div>Merci !
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