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For all those affected by a rare chromosome disorder.


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Date: Feb-20-2014 06:02:39 PM
Name: Chrissy greblick
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Referred By: E-Mail
Location: PA
Hi! Looking to get in touch with any families who have a child with a sex chromosome disorder. My son was diagnosed in May 2013 with XXXY and XXXXY disorder. Males typically have XY chromosomes but my son has many extras on almost all of his chromosomes most have XXXy but a few have XXXXY. At my large medical hospital my son's doctor has seen no one with his rare disorder. He is the only one. A genetic counselor shared the website Unique with us but not much else. They compare some if the symptoms Klinefelters but because this is not my son's diagnosis he does not have all symptoms just some. He lacks testosterone and will need treatments. He struggles academically but has already surpassed doctors expectations academically. I'm hoping someone has experience with this disorder and she'd some light on what I can expect with my son.
I am a special education teacher and know what it's like as a teacher but it's very difficult as a parent to watch your child struggle.
Please email me !