Smith-Magenis Syndrome or The flame of unquenchable maternal love: Testimonial on the diagnostic odyssey and the fight for rare diseases
Karima Benaboura
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"Diseases are cured with medicine and money, but above all with love." Mother Teresa Love is the love of my own flesh and blood, the love of life: mine, of course, but above all, the life I gave to my daughter. This love made me tear down the walls of silence, misunderstanding, suffering, and loneliness. In the face of illness and disability, I stood back up. I sought to learn, to understand, to make compromises, to forgive. In this way, I can, in turn, guide other parents in giving this love. I know that the love and determination of parents can overcome obstacles. This love endures through thick and thin, in the name of their child's happiness. It survives through the will to make every moment magical. I know that no obstacle is insurmountable... Karima Benaboura is a medical and paramedical professional with over 30 years of experience. For more than 20 years, she has fought alongside her daughter against Smith-Magenis syndrome. This "memoir" is a testimony to Karima's efforts in her battle against SMS. It is a description of: - the symptoms, - the daily struggle to obtain a diagnosis, - the sources of resilience that have sustained her. This book reads as a message of hope for all parents of children affected by orphan diseases.