Comments for trisomy voices http://trisomyvoices.podbean.com A collection of interviews with families touched by trisomy 18, trisomy 13, and other rare trisomy disorders. Wed, 20 Aug 2008 18:36:05 +0000 http://podbean.com/?v=3.2 Comment on Episode Six- Isaac Miller/Trisomy 18 Foundation by Kris http://trisomyvoices.podbean.com/2007/11/22/episode-six-isaac-millertrisomy-18-foundation/#comment-68779 Wed, 02 Jan 2008 03:26:54 +0000 http://trisomyvoices.podbean.com/2007/11/22/episode-six-isaac-millertrisomy-18-foundation/#comment-68779 Hi Rachael- I am so sorry for your loss. My sister lost her child, Claire, too. She was carried full term and lived for less than 24 hours. Claire touched all of our lives and initiated such change and intimacy in our family in her short life. We knew she was coming and we were aware of how short her life might be. Even during the time Claire was in the womb was a time of intimacy and she brought us all closer together. I hope your short time with Charles Seth brought you and yours closer. Kris Hi Rachael- I am so sorry for your loss. My sister lost her child, Claire, too. She was carried full term and lived for less than 24 hours. Claire touched all of our lives and initiated such change and intimacy in our family in her short life. We knew she was coming and we were aware of how short her life might be. Even during the time Claire was in the womb was a time of intimacy and she brought us all closer together. I hope your short time with Charles Seth brought you and yours closer. Kris

]]> Comment on Episode Six- Isaac Miller/Trisomy 18 Foundation by Rachael Carroll http://trisomyvoices.podbean.com/2007/11/22/episode-six-isaac-millertrisomy-18-foundation/#comment-68573 Mon, 31 Dec 2007 22:39:50 +0000 http://trisomyvoices.podbean.com/2007/11/22/episode-six-isaac-millertrisomy-18-foundation/#comment-68573 I was very touched by the interview. I lost a son due to full Trisomy18 on October 10th, 2007. I feel at peace for the outcome because I know he would have suffered should he had made it to term. I delivered him stillborn. He was named Charles Seth Istre. His daddy was named Charles Istre, and we both liked the middle name Seth. He weighed 2 lbs. 9 ozs. He was beautiful. My baby Seth is in Heaven now. I am very sure of that. I wish you all the best. I was very touched by the interview. I lost a son due to full Trisomy18 on October 10th, 2007. I feel at peace for the outcome because I know he would have suffered should he had made it to term. I delivered him stillborn. He was named Charles Seth Istre. His daddy was named Charles Istre, and we both liked the middle name Seth. He weighed 2 lbs. 9 ozs. He was beautiful. My baby Seth is in Heaven now. I am very sure of that. I wish you all the best.

]]> Comment on Pamela Rae- Episode one by trisomyvoices http://trisomyvoices.podbean.com/2007/09/13/pamela-rae-episode-one/#comment-63684 Mon, 03 Dec 2007 19:11:54 +0000 http://trisomyvoices.podbean.com/2007/09/13/pamela-rae-episode-one/#comment-63684 Andrea, There's a glitch with this first episode. If you hit play on the screen, it will play too fast. But, if you download the episode it will play at the right speed on your device or computer. There should be a download button on the site or you can download from itunes or another podcatacher. Please e-mail me, if you have further questions. Thanks for listening, or at least trying to. Maya Andrea, There’s a glitch with this first episode. If you hit play on the screen, it will play too fast. But, if you download the episode it will play at the right speed on your device or computer. There should be a download button on the site or you can download from itunes or another podcatacher. Please e-mail me, if you have further questions.

Thanks for listening, or at least trying to.

Maya

]]> Comment on Pamela Rae- Episode one by Andrea http://trisomyvoices.podbean.com/2007/09/13/pamela-rae-episode-one/#comment-63660 Mon, 03 Dec 2007 16:07:31 +0000 http://trisomyvoices.podbean.com/2007/09/13/pamela-rae-episode-one/#comment-63660 I guess I'm being dense, but I can't seem to figure out how to get this to play. I click on the icons, but it just brings me to a link to submit a new story. Any assistance would be greatly appreciated! Thanks so much! Andrea I guess I’m being dense, but I can’t seem to figure out how to get this to play. I click on the icons, but it just brings me to a link to submit a new story. Any assistance would be greatly appreciated!

Thanks so much! Andrea

]]> Comment on Episode 5-Noah’s Never Ending Rainbow by Melissa Roy http://trisomyvoices.podbean.com/2007/11/13/episode-5-noahs-never-ending-rainbow/#comment-62671 Wed, 28 Nov 2007 06:38:31 +0000 http://trisomyvoices.podbean.com/2007/11/13/episode-5-noahs-never-ending-rainbow/#comment-62671 I just wanted to say that I think this website is a wonderful idea. I happened upon it this evening and was just reading over it....and was pleasantly surprised to see a link to my new support group for families that have received a poor prental diagnosis, as I did with my son Bennett-Chadlen Roy. He was affected by Trisomy 13 and a non-severe Congenital Diaphragmatic Hernia. ALL OF THE FOLLOWING ARE PRIVATE GROUPS!!! Membership by approval only...no one can see your posts unless they are a member. The link to my group "Expecting-Blessings" has been altered accidently. Here is the new address, http://groups.yahoo.com/group/Expecting-Blessings/ I also have 3 other groups, "Awaiting-Angel-Blessings" for those expecting again following Infant Loss....a gift from their Angel above. http://groups.yahoo.com/group/Awaiting-Angel-Blessings/ "Wishing-on-a-Star" for those that are Trying-to-Conceive following Infant Loss. http://groups.yahoo.com/group/Wishing-on-a-Star/ "Broken-Hearted-Lullabies" for those that have opted for early birth for medical reasons and are living with regrets and heartache. I am here for you. http://health.groups.yahoo.com/group/Broken-Hearted-Lullabies/ I am currently the Moderator for the http://livingwithtrisomy13.org message boards: http://groups.yahoo.com/group/Livingwithtrisomy13/ http://health.groups.yahoo.com/group/TreasuredMemories/ Sometimes a trisomy brings with a Congenital Diaphragmatic Hernia. I am on the Board of Directors, and am a Moderator at the message boards here.... http://breathofhopeinc.com For further information my email address may be found at either of those sites. Thank you, Melissa Roy--Bennett~Chadlen Roy's proud mom, full trisomy 13 & chd I just wanted to say that I think this website is a wonderful idea. I happened upon it this evening and was just reading over it….and was pleasantly surprised to see a link to my new support group for families that have received a poor prental diagnosis, as I did with my son Bennett-Chadlen Roy. He was affected by Trisomy 13 and a non-severe Congenital Diaphragmatic Hernia.

ALL OF THE FOLLOWING ARE PRIVATE GROUPS!!! Membership by approval only…no one can see your posts unless they are a member.

The link to my group “Expecting-Blessings” has been altered accidently. Here is the new address, http://groups.yahoo.com/group/Expecting-Blessings/

I also have 3 other groups, “Awaiting-Angel-Blessings” for those expecting again following Infant Loss….a gift from their Angel above. http://groups.yahoo.com/group/Awaiting-Angel-Blessings/

“Wishing-on-a-Star” for those that are Trying-to-Conceive following Infant Loss. http://groups.yahoo.com/group/Wishing-on-a-Star/

“Broken-Hearted-Lullabies” for those that have opted for early birth for medical reasons and are living with regrets and heartache. I am here for you. http://health.groups.yahoo.com/group/Broken-Hearted-Lullabies/

I am currently the Moderator for the http://livingwithtrisomy13.org message boards: http://groups.yahoo.com/group/Livingwithtrisomy13/ http://health.groups.yahoo.com/group/TreasuredMemories/

Sometimes a trisomy brings with a Congenital Diaphragmatic Hernia. I am on the Board of Directors, and am a Moderator at the message boards here…. http://breathofhopeinc.com For further information my email address may be found at either of those sites.

Thank you, Melissa Roy–Bennett~Chadlen Roy’s proud mom, full trisomy 13 & chd

]]> Comment on Caileigh DeWitt-Episode 4 by Erin Hayes http://trisomyvoices.podbean.com/2007/10/11/caileigh-dewitt-episode-4/#comment-59345 Fri, 09 Nov 2007 18:27:34 +0000 http://trisomyvoices.podbean.com/2007/10/11/caileigh-dewitt-episode-4/#comment-59345 Responding to your question about how we explain Charlottes condition to strangers. Charlotte, like Mieko is very small and on oxygen all the time. She has partial trisomy 16 and partial monosomy 9, is 2 years old and 18 lbs. She cannot sit up or crawl yet. Children are always very interested in her and I encourage them to visit with her and say hi and appreciate parents who encourage thier children to visit with her. I think it's important to help other children become more comfortable with people with disabilities. With adults I usually expalin that she has a chromosomal abnormality kind of like Down syndrome, and from the response I get I can tailor my further explanation. Sometimes the person knows very little about genetics and I can leave it at that, and sometimes the person knows other trisomy families or is familar with chromosomes and we can talk more. I've met lots of amazing people this way. I don't mind at all when people ask questions about her and would much rather they ask than stare, steer their kids away from us or pretend we aren't there. The one funny experience I have had was when a waitress asked "whats wrong with her?" and because Charlotte wasn't crying or whining I answered "Nothing. She's fine." Then I relized the waitress was refering to her oxygen, etc. My lunch partner was offended for me but as I've mentioned, I'd rather people ask questions, even rather insenstive ones, than igmore us. Responding to your question about how we explain Charlottes condition to strangers. Charlotte, like Mieko is very small and on oxygen all the time. She has partial trisomy 16 and partial monosomy 9, is 2 years old and 18 lbs. She cannot sit up or crawl yet. Children are always very interested in her and I encourage them to visit with her and say hi and appreciate parents who encourage thier children to visit with her. I think it’s important to help other children become more comfortable with people with disabilities. With adults I usually expalin that she has a chromosomal abnormality kind of like Down syndrome, and from the response I get I can tailor my further explanation. Sometimes the person knows very little about genetics and I can leave it at that, and sometimes the person knows other trisomy families or is familar with chromosomes and we can talk more. I’ve met lots of amazing people this way. I don’t mind at all when people ask questions about her and would much rather they ask than stare, steer their kids away from us or pretend we aren’t there. The one funny experience I have had was when a waitress asked “whats wrong with her?” and because Charlotte wasn’t crying or whining I answered “Nothing. She’s fine.” Then I relized the waitress was refering to her oxygen, etc. My lunch partner was offended for me but as I’ve mentioned, I’d rather people ask questions, even rather insenstive ones, than igmore us.

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