Wednesday, June 19, 2019

Apert Syndrome Life Expectancy

  • CHARGE Syndrome: An Overview

    Pamela Ryan, Perkins School Psychologist, offers an overview of CHARGE Syndrome. She talks about CHARGE features, characteristics, medical ...
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  • Agenesis of the Corpus Callosum

    A child with agenesis of the corpus callosum explains the condition. For more videos visit www.facebook.com/specialbooksbyspecialkids.
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  • China's Influence (Living with Wolf–Hirschhorn Syndrome)

    China is diagnosed with Wolf-Hirschhorn syndrome. As a result, she is missing part of her 4th chromosome and is nonverbal. This hasn\'t prevented China from ...
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  • Facing a Terminal Illness with Strength and Love (Charcot Marie Tooth)

    Jacqueline is diagnosed with Charcot Marie Tooth Type 1D and was told to prepare for a shortened life expectancy. This is her story. Check out Jacqueline\'s non ...
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  • Dandy Walker

    Dr. Oller, emergency physician, talks about...
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  • Living with Bipolar Disorder

    Holliday is diagnosed with Bipolar Disorder Type II. For years she lived with cycles of hypomania followed by a deep depression. After seeking treatment ...
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  • Born Without a Part of the Brain (Agenesis of the Corpus Callosum)

    Jude is diagnosed with multiple brain abnormalities. He sees the world as a beautiful and wondrous place. Other children are sometimes turned off by Jude\'s ...
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  • Kate's Great Life (Pfeiffer Syndrome)

    Kate is diagnosed with Pfeiffer syndrome, a condition that causes her to look different from other children. Those who take the time to say \"hi\" to Kate will meet a ...
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  • Pronounced Dead at One Year Old (Now Alive at Age 32)

    Cody was pronounced dead as a toddler after an accidental drowning. To everyone\'s surprise, he was resuscitated and brought back to life. Now 32 and living ...
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  • Birthday party raises money for CHARGE syndrome patients

    LOVELAND, Ohio (WKRC) - A birthday party was held on Saturday at Grand Sands to raise money for those living with a rare syndrome, while remembering a ...
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  • Danica Aicardi syndrome. Seizure

    This video was uploaded from an Android phone.
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  • My Friend with Diprosopus (Two Faces)

    Tres was born with Diprosopus, which is Greek for \"Two Faces\". He may look different on the outside, but Tres still likes to make friends just like most people.
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  • Making it in Hollywood with a Disability (Spina Bifida)

    Tatiana is a wheelchair user living with multiple disabilities while trying to make it as an actor in Hollywood. Follow Tatiana at ...
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  • A Sister with Koolen-de Vries (Rare Genetic Disorder)

    Mirabel is diagnosed with a rare genetic disorder and communicates using assistive technology. Emme, her typically developing younger sister, also started ...
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  • Living with an Invisible Disability (Fetal Alcohol Spectrum Disorder)

    Johnny is diagnosed with Fetal Alcohol syndrome. His biological mother abused drugs and alcohol while he was in the womb. Now, his adoptive sister has ...
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  • chromosome 13 deletion

    Maya was born 12/6/2006 not 2008. This is a story of Maya who has a chromosome abnormality. She has a gross motor delay in which she isn\'t walking or ...
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  • The Purest Example of Love (Goldenhar Syndrome)

    Harry is diagnosed with Goldenhar syndrome and autism. His twin brother, Oliver, has learned from Harry that love is something to be expressed through action.
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  • Jeff's Dream (Living with Nager Syndrome)

    Jeff is diagnosed with Nager syndrome and communicates using assistive technology. This rare diagnosis results in shorter arms that prevent him from driving.
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  • Living with Williams Syndrome

    17-year-old, George Rautenbach, who has Williams syndrome proves to us in this interview that he too can excel and enjoy life just like you and me.
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  • Hallermann-Streiff Syndrome (Fewer than 200 Known Cases)

    Michelle is diagnosed with Hallermann-Streiff syndrome and is literally one in five million. She hopes to one day meet a long-haired man who is in touch with his ...
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