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I'm determined to save my daughter, Savannah's life and stop her suffering! Savannah is the sweetest, happiest little girl, despite all she goes through. Savannah was born with an ultra-rare progressive neurodegenerative disease called SMC1A Developmental Epileptic Encephalopathy. She is missing a very important protein in her SMC1A gene. This disease affects virtually every part of her body. This disease causes a catastrophic life-threatening form of epilepsy and progressive neurodevelopmental
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