Living with an Unknown Genetic Syndrome (The Only Discovered Case)

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Evely lives with an unknown genetic condition. At four years old she is unable to walk or talk. The future is uncertain, but Evely’s big sister promises to protect her no matter what happens. Follow Evely at https://www.instagram.com/housegypsy/ Evely's diagnoses include Bilateral anophthalia, congenital heart disease, microcephaly, hypotonia, abnormal brain waves, obstructive sleep apnea, Gastroesophageal reflux disease Support SBSK at https://www.patreon.com/SBSK SBSK Socials: http://www.instagram.com/specialbooksbyspecialkids https://twitter.com/chrisulmer https://www.facebook.com/specialbooksbyspecialkids https://www.reddit.com/r/sbsk

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Published 18 March 2015| Subscribed 2,060,000| Videos 327


SBSK (Special Books by Special Kids) started when I was a special education teacher. My students and I originally set out to publish a book in which they shared what life is like from their perspective. we hoped that this would help educate others on what it is like to live with a disability. No publishers were interested so we then started creating videos. Soon, people around the world started emailing me asking if I could interview them also. Although the medium has changed, the idea remains the same. Founded in 2016, SBSK is a 501(c)3 organization that seeks to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration. This multi-media movement supports the acceptance and celebration of all members of the neurodiverse community regardless of diagnosis, age, race, religion, income, sexual orientation, gender or gender expression. -Chris

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