I Have a Child With a Rare Disorder

Personal Stories, Advice, and Support 5 People

    My child has BPES

    I joined this site to find other parents who have a child with a rare disorder. It is hard to find a support group for them. Maybe I can help change that.
    lynessatusing1 lynessatusing1
    3 Responses Feb 22, 2009

    Inquiry From Rare Genomics Institute Interns

    Dear Sir or Madam, We are high school students from Eastern Canada currently interning with the Rare Genomics Institute. It is a non-profit organization that provides families affected by rare genetic disorders access to genome sequencing and expert analysis. Our main project is...
    RGIinterns RGIinterns
    Aug 13, 2013

    Dr. Quackenstein

    Went ot the ER and even after telling the doctor that my daughter's condition leaves her suseptible to to Arrythmia and heart problems this doofus tells me that her heart rate running from 73-110+ is just muscle twitching. What an a*s.
    SummersBreeze SummersBreeze
    41-45, F
    1 Response Feb 21, 2012

    Bilateral Nodular Periventricular Heterotopia

    Hello my daughter has bilateral nodular periventricular heterotopia. It causes epilepsy and mental retardation. It is a spectrum disorder. She has not aged mentally since about 7 years of age and she is now 10 years old. She cannot read or write. She doesn't know what day of the...
    SummersBreeze SummersBreeze
    41-45, F
    1 Response Feb 16, 2012


    My son has, not quite as rare as your kids, but he has eosinophillic gastroenteritus. It's a specific form of EGID and I'm sure I spelled it wrong. My family has dealt with this before but it's still demanding on me even if it isn't new. He also has asthma, not rare, but annoying...
    KiFire89 KiFire89
    22-25, F
    Feb 27, 2012
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