rett-syndrome
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Encourager l’apprentissage de la propreté : petites victoires deviendront grandes
En tant que parent d’une enfant non verbale atteinte du syndrome de Rett, j’ai souvent fait face à des doutes et des résistances, même de la part de professionnels bien intentionnés. Cependant, après six mois d’efforts, je suis ravie de… Continue reading
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Encouraging Potty Training: Small Victories Will Become Great
As a parent of a non-verbal child with Rett syndrome, I have often faced doubts and resistance, even from well-meaning professionals. However, after six months of effort, I am thrilled to share that my daughter has made incredible progress in… Continue reading
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So Your Child Was Just Diagnosed with Rett Syndrome—and You Don’t Believe in God
When my daughter was diagnosed with Rett syndrome, I found myself navigating an emotional and intellectual minefield. As someone who doesn’t find comfort in religious frameworks, I was challenged to find resources that resonated with my perspective. Through my search,… Continue reading
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Seeking Relief: The Complexities of Hiring Carers and the Need for Respite in Rett Syndrome
Caring for a child with Rett syndrome is an incredibly demanding and challenging task. The complexities of the condition, which include severe cognitive, physical, and communicative impairments, require carers to possess specialized skills and profound patience. Unfortunately, hiring qualified carers… Continue reading
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Faire Face à la Réalité : Comprendre le Déni chez les Familles Touchées par le Syndrome de Rett
Le déni est un mécanisme de défense psychologique où une personne refuse d’accepter la réalité ou les faits, souvent parce qu’ils sont trop douloureux ou difficiles à gérer. Ce mécanisme peut protéger l’individu de l’anxiété ou du stress temporairement, mais… Continue reading
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Intellectual Abilities and AAC Devices in Rett Syndrome
For decades, it was believed that individuals who suffer from Rett Syndrome have severe intellectual disability. As a matter of fact, most scientific literature to this day defines Rett Syndrome as one of the leading causes of “mental retardation” in… Continue reading
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Chapter 6: The Clinical Trial Journey Begins
The crisp Canadian air filled Andree’s lungs as she stepped off the plane in Toronto. Beside her, Adeline squirmed in her adapted stroller, her wide eyes taking in the unfamiliar surroundings. The whole preparation for the trip had been exhausting,… Continue reading
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Chapter 5: The Long Road to Clinical Trials
The path to enrolling their daughters in the gene therapy clinical trials was fraught with obstacles. Andree, Rana, and Maria faced a daunting array of paperwork, medical evaluations, and logistical challenges. Each step forward seemed to be met with a… Continue reading
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Chapter 4: Seeking New Horizons
The quest for better treatments and a potential cure for Rett syndrome became a consuming focus for all three mothers. They attended conferences, spoke with leading researchers, and kept abreast of the latest scientific developments. It was during one such… Continue reading
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Chapter 3: The Struggle for Support
The days that followed the diagnosis were a whirlwind of emotions for Andree, Rana, and Maria. Each mother faced her own unique struggles but found strength in their growing friendship. They quickly discovered that navigating the complex world of special… Continue reading
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