tag:blogger.com,1999:blog-4705266259949217597.post267377295088940906..comments2023-06-01T01:03:01.176-07:00Comments on The Daily Dakin: SMARD--A Brief TutorialDevonhttp://www.blogger.com/profile/17316736355666634824noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-4705266259949217597.post-49760421924353905322012-07-06T13:57:22.221-07:002012-07-06T13:57:22.221-07:00My son is 4 months old right now, and we got teste...My son is 4 months old right now, and we got tested for this. He has had problems since birth. SMA was neg, but SMARD came back as indeterminate, which means they could only find one mutated gene. We are still really hopeful and I am always on the look out for more info about SMARD. Thanks for your blog I will be following.Anonymoushttps://www.blogger.com/profile/12919853586497528148noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-16802930173442972582012-04-10T19:47:23.525-07:002012-04-10T19:47:23.525-07:00To the previous poster...hello! Thank you so much ...To the previous poster...hello! Thank you so much for commenting! It is always good to find new people!! I would love to meet your patient's parents...please email me! poundoutsma@gmail.comDevonhttps://www.blogger.com/profile/17316736355666634824noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-1756862836314472222012-03-29T15:31:56.662-07:002012-03-29T15:31:56.662-07:00I am a home health nurse. My client has believed t...I am a home health nurse. My client has believed to discover that she actually has SMARD not SMA I. She tested negative for SMA I. As You stated SMARD is a newer diagnosis and FYI my client just turned 15! She is doing well and remains healthy. SMARD didn't exist when she was first diagnosed. Thank you for this blog because it helped us figure out her real diagnosis! Well wishes and blessings for you all.Unknownhttps://www.blogger.com/profile/01265961703318887766noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-59907463946036802202011-10-12T13:06:42.295-07:002011-10-12T13:06:42.295-07:00Thank you for sharing! As a nurse this is interes...Thank you for sharing! As a nurse this is interesting as in my community there are at least two SMA kids and one of them SMARD. I would love to add your blog to follow. :-)Sophia Laelhttps://www.blogger.com/profile/16085512676951164348noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-36099576284505137522009-12-11T09:12:29.826-08:002009-12-11T09:12:29.826-08:00www.kendraandryanwebster.blogspot.com New diagnosi...www.kendraandryanwebster.blogspot.com New diagnosis.Lizhttps://www.blogger.com/profile/00505973049364747425noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-2224245924055131472009-11-09T11:20:41.847-08:002009-11-09T11:20:41.847-08:00Hello there! It is so nice to see you getting on a...Hello there! It is so nice to see you getting on and enjoying an ordinary life as much as is possible. My son Tom had SMARD1. We live in Liverpool and that is exactly how we lived our life- bubbles- giggles- gardening- swimming- facepaints! Tom was born in 2000, vented at 6 months and the dignosis came in 2004. he died aged 6, his life was full and fun and challenging and we miss him. We had Libby at the end of 2004 so Tom got to be a fab big brother, and now Ned is here to hear and see all the stories and videos and pictures of our family life with Tom. There were only 10 hits for SMARd1 in google in 2004! No sign of any familes on line so this is a great blog for others in your situation that need to share. Take care xcathyhttps://www.blogger.com/profile/15765489294934073415noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-48422520039283389042009-11-06T16:17:39.139-08:002009-11-06T16:17:39.139-08:00Jeff: please do! I'd be happy to answer any q...Jeff: please do! I'd be happy to answer any questions you might have. I saw you're in TX--we are too. Email me at poundoutsma@gmail.com<br /><br />Looking forward to talking to you!Devonhttps://www.blogger.com/profile/17316736355666634824noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-37911331183563443992009-11-04T14:46:57.819-08:002009-11-04T14:46:57.819-08:00My daughter is being tested for SMARD. Did Dakin ...My daughter is being tested for SMARD. Did Dakin lose his voice prior to being intubated? Could I contact you with more questions?Jeff Blackhttps://www.blogger.com/profile/06711497577154937045noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-65745092382855422172009-10-28T23:08:55.532-07:002009-10-28T23:08:55.532-07:00My 7 month old son was just diagnosed with this. I...My 7 month old son was just diagnosed with this. It is very sad. He has been hospitalised since he was almost 2 months old. Now he is out on a home ventilator and we were hopeing he would grow out of whatever was wrong until the doctors called and said he tested positive for smard.avidehttps://www.blogger.com/profile/17129891079066222097noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-61938252735815457732009-08-20T04:17:29.174-07:002009-08-20T04:17:29.174-07:00I've made myself a note to use your post on ou...I've made myself a note to use your post on our blog, and I'm going to try to find the SMARD Facebook page... all by myself :)<br /><br />Helen/'Lucy'Lucy and Ethelhttps://www.blogger.com/profile/01034416537494911411noreply@blogger.comtag:blogger.com,1999:blog-4705266259949217597.post-32390422241001977852009-08-19T22:19:47.483-07:002009-08-19T22:19:47.483-07:00thanks for sharing this info, I have been wonderin...thanks for sharing this info, I have been wondering about the difference. <br />big hugsJuniorhttps://www.blogger.com/profile/03719754876592849914noreply@blogger.com