tag:blogger.com,1999:blog-3265009737359661353.post8078221558985023126..comments2023-10-01T05:52:03.758-04:00Comments on Where do we go from here.....: Trisomy 13Meghanhttp://www.blogger.com/profile/15525601797993137270noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-3265009737359661353.post-83469920098372102592011-11-02T11:14:40.301-04:002011-11-02T11:14:40.301-04:00This comment has been removed by the author.Living With Partial Trisomy 13https://www.blogger.com/profile/05075075781295358149noreply@blogger.comtag:blogger.com,1999:blog-3265009737359661353.post-14660108213521450152011-08-05T17:44:14.684-04:002011-08-05T17:44:14.684-04:00My name is Krysta and my friend Jason (your co-wor...My name is Krysta and my friend Jason (your co-worker) told me about Quinn. I believe he shared my daughter's web site with you, but I wanted to reach out to you ASAP to tell you I am here to support you, listen to you and answer any questions you have. My daughter, Josephine, whom I also called Bean (or Josa-bean or J-Bean or Josephine-a-bean), was born with Tetrasomy 8p Mosaicism. She is 1 of 20 in the world with this disorder and there is no information to provide an accurate prognosis. Her web site is www.normalforjosephine.com.<br /><br />While I live in New Jersey, I will actually be in Ohio this weekend for a family reunion. My parents live in Fairlawn. I would love to meet you, introduce you to my Josephine and answer any questions. I know Josephine doesn't have the same disorder and initially, I only wanted to talk to parents whose children have the exact chromosome disorder. Now, after living with her diagnosis for 2 years (she was diagnosed at 10 months old), I can say it doesn't matter who you talk to because we all can relate on some level.<br /><br />I am also the New Jersey support contact for the Chromosome Disorder Outreach (http://chromodisorder.org/CDO/).<br /><br />Please feel free to call me at 646-303-9840 or email me at klract@aol.com. We can meet up on Sunday.<br /><br />All my best to you and I hope to meet (or at least speak to) you soon.<br /><br />Best,<br />Krysta SenekKrysta Senekhttp://www.normalforjosephine.comnoreply@blogger.com