I Have Coffin-siris Syndrome

A Coffin-Siris Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Coffin-Siris Syndrome. You're not alone. 6 People

    Mother Of Julia

    Julia is perfect just the way she is, but we want to be sure and help her be the BEST Julia she can be! That's what we've said for nearly 7 full years now. We noticed she wasn't hitting all her major benchmarks as early as 9 months old. Ever since we've been looking for...
    tchavira tchavira
    31-35, F
    3 Responses Jul 21, 2012

    I Have A Disability Called Coffin Siris Syndrome

    I have Coffin Siris Syndrome it's a rare genetic disorder that may be evident at birth (congenital). The disorder may be characterized by feeding difficulties and frequent respiratory infections during infancy, diminished muscle tone (hypotonia), abnormal looseness (laxity) of...
    emilyscott2021 emilyscott2021
    22-25, F
    3 Responses Nov 10, 2011

    Blessed With Coffin Siris

    I am the mother of 6 beautiful children,one of has coffiin-Siris Syndrome. He is my 3rd child. I did not know that there would be anything "different" about my child before he was born. I'm glad I did not know! We didn't notice he had any health issues at first. In retrospect,he...
    joyfullonehappy joyfullonehappy
    1 Response Jan 14, 2013
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