Comments on: Support http://www.amcdocumentary.org Living with AMC Sat, 04 Feb 2012 10:34:28 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Janelle http://www.amcdocumentary.org/support/comment-page-1#comment-27516 Janelle Thu, 02 Feb 2012 20:44:19 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-27516 Just wanted to mention that we launched an electronic growth charts application at MyGrowthCharts.com, that has charts specific for Amyoplasia, it is free to register for families and you can share the chart with family members and physicians. Kind Regards. Just wanted to mention that we launched an electronic growth charts application at MyGrowthCharts.com, that has charts specific for Amyoplasia, it is free to register for families and you can share the chart with family members and physicians. Kind Regards.

]]> By: Wood Floors http://www.amcdocumentary.org/support/comment-page-1#comment-27220 Wood Floors Mon, 30 Jan 2012 16:39:50 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-27220 <strong>Its hard to find good help...</strong> I am constantnly proclaiming that its hard to get quality help, but here is... Its hard to find good help…

I am constantnly proclaiming that its hard to get quality help, but here is…

]]> By: George Smith http://www.amcdocumentary.org/support/comment-page-1#comment-20693 George Smith Fri, 02 Dec 2011 16:52:35 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-20693 That is some GREAT information. I am very impressed and can't wait for more like it. That is some GREAT information. I am very impressed and can’t wait for more like it.

]]> By: amcdocumentary http://www.amcdocumentary.org/support/comment-page-1#comment-16932 amcdocumentary Wed, 12 Oct 2011 13:38:00 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-16932 Good to meet you. I think it is a great idea to share with your class. I am finding so many people with AMC and I suppose it is because I have a personal connection. The more we can promote awareness, the more families we can help. The oldest living person with AMC I have met is 80 years and has led an amazing life. I would love to talk to you more and learn about how you are affected. I will email you separately. Also if you haven't visited our support group site, www.amcsupport.org please go and visit. You can also find plenty of us online at Facebook and Google + and Twitter. Good to meet you. I think it is a great idea to share with your class. I am finding so many people with AMC and I suppose it is because I have a personal connection. The more we can promote awareness, the more families we can help. The oldest living person with AMC I have met is 80 years and has led an amazing life. I would love to talk to you more and learn about how you are affected. I will email you separately. Also if you haven’t visited our support group site, http://www.amcsupport.org please go and visit. You can also find plenty of us online at Facebook and Google + and Twitter.

]]> By: Ashlee Carter http://www.amcdocumentary.org/support/comment-page-1#comment-16910 Ashlee Carter Wed, 12 Oct 2011 07:14:15 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-16910 I am 26 years old and have Arthrogryposis. I'm affected in my elbows and and wrist. I'm currently in college working on a second Bachelors in Family and Child Studies with a concentration in Child Life. I'm taking a class on childhood diseases and disorders and we have to present a disease or disorder that affects children. Being a person born with a cogenital condition I decided why not share my conditon with the class. I never really knew much about Arthrogryopsis only that in my case during my mother's pregnancy there was a lack of amniotic fluid and I barely moved and that Arthrgryposis can occur in 1in 3000 births and varies from person to person. Since I've been researching I've been amazed at out many people are actually affected by it. Because this being a rare condition I never seen anybody in person with the conditon except for a babysitter I had when I too young to remember. I watched the video clip sweetest gift: living with Arthrogryposis and feel the same as most of the people who made comments. I've even had people assume that I have Cerebral Palsy. I'm like no! I don't have that! As the saying goes when you assume you make an ass out of u and not me. LOL I am 26 years old and have Arthrogryposis. I’m affected in my elbows and and wrist. I’m currently in college working on a second Bachelors in Family and Child Studies with a concentration in Child Life. I’m taking a class on childhood diseases and disorders and we have to present a disease or disorder that affects children. Being a person born with a cogenital condition I decided why not share my conditon with the class. I never really knew much about Arthrogryopsis only that in my case during my mother’s pregnancy there was a lack of amniotic fluid and I barely moved and that Arthrgryposis can occur in 1in 3000 births and varies from person to person. Since I’ve been researching I’ve been amazed at out many people are actually affected by it. Because this being a rare condition I never seen anybody in person with the conditon except for a babysitter I had when I too young to remember. I watched the video clip sweetest gift: living with Arthrogryposis and feel the same as most of the people who made comments. I’ve even had people assume that I have Cerebral Palsy. I’m like no! I don’t have that! As the saying goes when you assume you make an ass out of u and not me. LOL

]]> By: amcdocumentary http://www.amcdocumentary.org/support/comment-page-1#comment-15830 amcdocumentary Thu, 22 Sep 2011 15:31:42 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-15830 Nicholas, thanks for commenting. I would love to hear more about your story and happy to answer any questions. Please be sure to visit http://www.amcsupport.org, our support group site. There are also a number of AMC support groups on Facebook. There are many families and individuals available to answer any questions. I will email you separately to provide some additional contact information. Nicholas, thanks for commenting. I would love to hear more about your story and happy to answer any questions. Please be sure to visit http://www.amcsupport.org, our support group site. There are also a number of AMC support groups on Facebook. There are many families and individuals available to answer any questions. I will email you separately to provide some additional contact information.

]]> By: nicholas webster http://www.amcdocumentary.org/support/comment-page-1#comment-14608 nicholas webster Sat, 27 Aug 2011 09:27:06 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-14608 I am 24 and I was born with arthogryposis from head to toe. If someone would please email me I have alot of questions to ask. I am 24 and I was born with arthogryposis from head to toe. If someone would please email me I have alot of questions to ask.

]]> By: Ecklecia morris http://www.amcdocumentary.org/support/comment-page-1#comment-14347 Ecklecia morris Sun, 21 Aug 2011 02:23:21 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-14347 Thanks margaret, what a wonderful welcome. I am pleased to heart about others who are doing wonderful things even with this diagnosis. It keeps my hopes up and yes she is very smart. No I haven't visited the website, but thanks to you I will. I will see you on fb. Thanks again! God bless you and the people who created this site. Thanks margaret, what a wonderful welcome. I am pleased to heart about others who are doing wonderful things even with this diagnosis. It keeps my hopes up and yes she is very smart. No I haven’t visited the website, but thanks to you I will. I will see you on fb. Thanks again! God bless you and the people who created this site.

]]> By: amcdocumentary http://www.amcdocumentary.org/support/comment-page-1#comment-13648 amcdocumentary Fri, 05 Aug 2011 02:29:24 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-13648 Ecklecia, welcome to our family. Makajah will grow up to live a healthy happy lives. Many of my friends with arthrogryposis are married, some have children and all are working in careers like professional breakdancer, motivational speaker, teacher, computer engineer, writer, graphic design and more. My son Owen is 5 and affected in all four limbs. The doctors initially told us Owen wouldn't move his arms or walk. Today he feeds himself and is learning to walk with a walker. The best part of our journey is being part of the AMC Support family. I would have been lost without the support group. Have you visited the site? http://www.amcsupport.org. There are also many of us on Facebook (feel free to friend me Margaret Chaidez). Makajah will learn to do things in her own way, her own style. The one thing I have learned about my son and others with his condition, they are determined and very smart. Please feel free to ask any questions. Again, welcome to our family. Ecklecia, welcome to our family. Makajah will grow up to live a healthy happy lives. Many of my friends with arthrogryposis are married, some have children and all are working in careers like professional breakdancer, motivational speaker, teacher, computer engineer, writer, graphic design and more. My son Owen is 5 and affected in all four limbs. The doctors initially told us Owen wouldn’t move his arms or walk. Today he feeds himself and is learning to walk with a walker. The best part of our journey is being part of the AMC Support family. I would have been lost without the support group. Have you visited the site? http://www.amcsupport.org. There are also many of us on Facebook (feel free to friend me Margaret Chaidez). Makajah will learn to do things in her own way, her own style. The one thing I have learned about my son and others with his condition, they are determined and very smart. Please feel free to ask any questions. Again, welcome to our family.

]]> By: Ecklecia morris http://www.amcdocumentary.org/support/comment-page-1#comment-13646 Ecklecia morris Fri, 05 Aug 2011 02:14:20 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-13646 Hi, My name is ecklecia morris and I have a daughter with arthrogryposis. Her name is Makajah and she is about to be 10 months old. They originally have her 2moro days to live do to alot of other issues. She was also diagnosed with hyper extension of her neck, clubbed feet, abnormal brain and bilateral vocal cord paralysis. She also has a trach and a g-tube. Even through all this she is a very strong and blessed child. It gets a little hard not to hear her cry out make a sound, but I can tell what she needs by her breathing. She was 4 lbs 3 oz at birth. She is still trying to learn to smile and she tries to move some of her body parts. She is a very smart child. As of now her brain results came out that she is only one month behind her actual age. I was wondering if it was possible for her to be happy and one day married and I read about some who had and I wish that for her. Hi,
My name is ecklecia morris and I have a daughter with arthrogryposis. Her name is Makajah and she is about to be 10 months old. They originally have her 2moro days to live do to alot of other issues. She was also diagnosed with hyper extension of her neck, clubbed feet, abnormal brain and bilateral vocal cord paralysis. She also has a trach and a g-tube. Even through all this she is a very strong and blessed child. It gets a little hard not to hear her cry out make a sound, but I can tell what she needs by her breathing. She was 4 lbs 3 oz at birth. She is still trying to learn to smile and she tries to move some of her body parts. She is a very smart child. As of now her brain results came out that she is only one month behind her actual age. I was wondering if it was possible for her to be happy and one day married and I read about some who had and I wish that for her.

]]> By: Rose http://www.amcdocumentary.org/support/comment-page-1#comment-10741 Rose Wed, 18 May 2011 04:35:17 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-10741 Hi I really enjoy your site it good to see such a positive site. I am a 41 year woman from New Zealand. I have AMC, it effects all my limbs. I have been married for nearly 16 years to a fab man named Adrian. We have two beautiful children. They were both born full term by C-section. I am social worker and I work part time in the health sector. It is refreshing to see a site that does not focus solely on surgery for AMC children. There is so much more to us both as children and adults. Regards Rose Hi I really enjoy your site it good to see such a positive site. I am a 41 year woman from New Zealand. I have AMC, it effects all my limbs. I have been married for nearly 16 years to a fab man named Adrian. We have two beautiful children. They were both born full term by C-section. I am social worker and I work part time in the health sector. It is refreshing to see a site that does not focus solely on surgery for AMC children. There is so much more to us both as children and adults.

Regards
Rose

]]> By: Catlin http://www.amcdocumentary.org/support/comment-page-1#comment-10016 Catlin Fri, 01 Apr 2011 19:26:33 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-10016 I love seeing all these people that affected by arthrogryposis talking about living full happy lives it's very moving. My daughter is 7 months old and was born with arthrogryposis and everyone on here gives me so much hope that she will also. Even though her case isn't bad it's still so hard for me to know she's going to obstacles in her life that most people wont have. She was also born with gastroschisis and it's a miracle she's even here so she's already prove to me that she is a fighter and no matter obstacle is put in front of her she will do it to her fullest ability! I would love to talk anyone who is affected or has a baby that is affected with arthrogryposis. I have tons of questions! I love seeing all these people that affected by arthrogryposis talking about living full happy lives it’s very moving. My daughter is 7 months old and was born with arthrogryposis and everyone on here gives me so much hope that she will also. Even though her case isn’t bad it’s still so hard for me to know she’s going to obstacles in her life that most people wont have. She was also born with gastroschisis and it’s a miracle she’s even here so she’s already prove to me that she is a fighter and no matter obstacle is put in front of her she will do it to her fullest ability! I would love to talk anyone who is affected or has a baby that is affected with arthrogryposis. I have tons of questions!

]]> By: Catlin http://www.amcdocumentary.org/support/comment-page-1#comment-10015 Catlin Fri, 01 Apr 2011 19:15:31 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-10015 Hi jeanni my names catlin Im also 18 with a child that was born with arthrogryposis we are goin through the same struggles as you and everyone else that is affected and who has a child born with arthrogryposis. If you ever wanna talk you can email me anytime! Hi jeanni my names catlin Im also 18 with a child that was born with arthrogryposis we are goin through the same struggles as you and everyone else that is affected and who has a child born with arthrogryposis. If you ever wanna talk you can email me anytime!

]]> By: Kelly http://www.amcdocumentary.org/support/comment-page-1#comment-9780 Kelly Thu, 17 Mar 2011 02:33:21 +0000 http://maggie.graphicallydesigningblogs.com/?page_id=5#comment-9780 Hi there, I love the website you have going and am interested to watch your documentary! I am a 23 year old living with Arthrogryposis. I lead a very normal life, I teach first grade and am getting married in the fall. I have never known anyone who also had Arthrogryposis- but love reading stories about others, it is so empowering! Thank you for all the effort you have put forth in spreading awareness about Arthrogryposis! Kelly Hi there,

I love the website you have going and am interested to watch your documentary! I am a 23 year old living with Arthrogryposis. I lead a very normal life, I teach first grade and am getting married in the fall. I have never known anyone who also had Arthrogryposis- but love reading stories about others, it is so empowering! Thank you for all the effort you have put forth in spreading awareness about Arthrogryposis!

Kelly

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