Comments for 4p- Support Group http://4p-supportgroup.org Wolf-Hirschhorn Syndrome Wed, 08 Feb 2012 14:59:19 +0000 hourly 1 http://wordpress.org/?v=3.1.3 Comment on About Jackie by Amanda http://4p-supportgroup.org/about-jackie/#comment-48 Amanda Wed, 08 Feb 2012 14:59:19 +0000 http://4p-supportgroup.org/?p=837#comment-48 Robin, I emailed you the names and contact info for a few families near you who would like to hear from you and possibly meet. If you don't get my email please contact me at president@4p-supportgroup.org. Jackie will be in touch too. We're so happy to hear from you. Thanks! Robin, I emailed you the names and contact info for a few families near you who would like to hear from you and possibly meet. If you don’t get my email please contact me at president@4p-supportgroup.org. Jackie will be in touch too. We’re so happy to hear from you. Thanks!

]]> Comment on About Jackie by Robin M Menzie http://4p-supportgroup.org/about-jackie/#comment-46 Robin M Menzie Tue, 07 Feb 2012 21:58:30 +0000 http://4p-supportgroup.org/?p=837#comment-46 Hi Jackie, My name is Robin. I live in Racine,WI.I have twin boys born with whs.they were born march of 1998.i would love for u to help me contact other families in my area.thank you! Hi Jackie,

My name is Robin. I live in Racine,WI.I have twin boys born with whs.they were born march of 1998.i would love for u to help me contact other families in my area.thank you!

]]> Comment on Craig Richardson: A Life Worth Living, With Disabilities by Craig Richardson: A Life Worth Living, With Disabilities http://4p-supportgroup.org/craig-richardson-a-life-worth-living-with-disabilities/#comment-25 Craig Richardson: A Life Worth Living, With Disabilities Tue, 25 Oct 2011 03:31:39 +0000 http://4p-supportgroup.org/?p=1063#comment-25 [...] Craig Richardson: A Life Worth Living, With Disabilities Tags: Social Issues, Becky RichardsonCraig, patient care, coping strategies, neediness, support group, gratitude [...] [...] Craig Richardson: A Life Worth Living, With Disabilities Tags: Social Issues, Becky RichardsonCraig, patient care, coping strategies, neediness, support group, gratitude [...]

]]> Comment on An Amazing Connection Made by Anonymous http://4p-supportgroup.org/yin-robby-and-elizabeth-story/#comment-18 Anonymous Thu, 18 Aug 2011 04:58:46 +0000 http://wolf-hirschhornsyndrome.com/?p=67#comment-18 Hi! Thanks Amanda and Yin!! The help and support I received is really awesome!! Loved meeting Elizabeth and Jimmy that day...x Hi! Thanks Amanda and Yin!! The help and support I received is really awesome!! Loved meeting Elizabeth and Jimmy that day…x

]]> Comment on An Amazing Connection Made by Anonymous http://4p-supportgroup.org/yin-robby-and-elizabeth-story/#comment-17 Anonymous Sat, 13 Aug 2011 21:11:08 +0000 http://wolf-hirschhornsyndrome.com/?p=67#comment-17 Amanda, thank you for putting us in touch with Margaret. We have met twice already, the first visit was brief but the second visit was great. We also met up with the 4P- family who I said I approached in Hong Kong "on the street", they are not on the list serve. It was a good meeting, the group often describes our group of parents/members as "family" and that's really what it is. A group of strangers get-together but yet feel they have so much in common and instantly want to share so much and be supportive and helpful. Amanda, thank you for putting us in touch with Margaret. We have met twice already, the first visit was brief but the second visit was great. We also met up with the 4P- family who I said I approached in Hong Kong “on the street”, they are not on the list serve. It was a good meeting, the group often describes our group of parents/members as “family” and that’s really what it is. A group of strangers get-together but yet feel they have so much in common and instantly want to share so much and be supportive and helpful.

]]> Comment on An Amazing Connection Made by Amanda http://4p-supportgroup.org/yin-robby-and-elizabeth-story/#comment-14 Amanda Sun, 31 Jul 2011 15:59:51 +0000 http://wolf-hirschhornsyndrome.com/?p=67#comment-14 Update- We were able to connect this family with another WHS family who lives near them in Hong Kong. They have emailed, spoken on the phone and are making plans to meet soon. There is nothing like meeting other WHS families and through our registry we are able to help families connect with one another. If you haven't registered yet you should consider doing so now! Update- We were able to connect this family with another WHS family who lives near them in Hong Kong. They have emailed, spoken on the phone and are making plans to meet soon. There is nothing like meeting other WHS families and through our registry we are able to help families connect with one another. If you haven’t registered yet you should consider doing so now!

]]> Comment on You Are Not Alone by Amanda http://4p-supportgroup.org/you-are-not-alone/#comment-13 Amanda Sun, 31 Jul 2011 15:54:34 +0000 http://wolf-hirschhornsyndrome.com/?p=202#comment-13 Stephanie, I emailed you and Patty but didn't hear back. I emailed again today but just in case I will send this reply here as well. We have another pre-natal case we are working on and the baby's deletion and hernia sound very similar to your baby. Please contact me as soon as you are able. president@4p-supportgroup.org. Thanks! -Amanda Stephanie, I emailed you and Patty but didn’t hear back. I emailed again today but just in case I will send this reply here as well. We have another pre-natal case we are working on and the baby’s deletion and hernia sound very similar to your baby. Please contact me as soon as you are able. president@4p-supportgroup.org. Thanks! -Amanda

]]> Comment on An Amazing Connection Made by Anonymous http://4p-supportgroup.org/yin-robby-and-elizabeth-story/#comment-12 Anonymous Sat, 23 Jul 2011 11:31:40 +0000 http://wolf-hirschhornsyndrome.com/?p=67#comment-12 Hi! I live in hong kong too and my daughter was just recently diagnosed. I'm feeling really alone and hoping to connect with anyone that can relate or I can console in. Hope we can connect.... Hi! I live in hong kong too and my daughter was just recently diagnosed. I’m feeling really alone and hoping to connect with anyone that can relate or I can console in. Hope we can connect….

]]> Comment on You Are Not Alone by Stephanie http://4p-supportgroup.org/you-are-not-alone/#comment-9 Stephanie Fri, 10 Jun 2011 08:22:36 +0000 http://wolf-hirschhornsyndrome.com/?p=202#comment-9 The big problem with my little angel baby is that he has a CDH (diaphragmatic hernia). And since he has been diagnosed with 4p- they told me no doctor would fix his hernia. that type of hernia cause the stomach contents to be pushed up where the lungs grow. If his lungs develop enough for him to be able to breathe on his own. He will have a fighting chance but they refuse to help him medically. Is basically what I'm understanding. The big problem with my little angel baby is that he has a CDH (diaphragmatic hernia). And since he has been diagnosed with 4p- they told me no doctor would fix his hernia. that type of hernia cause the stomach contents to be pushed up where the lungs grow. If his lungs develop enough for him to be able to breathe on his own. He will have a fighting chance but they refuse to help him medically. Is basically what I’m understanding.

]]> Comment on You Are Not Alone by Stephanie http://4p-supportgroup.org/you-are-not-alone/#comment-8 Stephanie Fri, 10 Jun 2011 07:34:32 +0000 http://wolf-hirschhornsyndrome.com/?p=202#comment-8 Hi I'm Pattys daughter. Hi I’m Pattys daughter.

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