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Disclaimer: This site is to share a mother's personal experiences, learning and hypothesis, but every individual's case is different even within the same gene variant of the same syndrome. Any clinical information on a rare disease is limited even to medical professionals and is subject to change. Currently, most of the information available for me is preclinical studies (test tubes and animal studies), and more reliable large-scale clinical studies on actual patients need to wait. It is your responsibility to always re-evaluate the ever-changing information, medical articles and my interpretation shared on this web site pages. It is your responsibility to consult with medical professionals before trying anything at your on risk. Good luck with your journey