Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Welcome !! I'm so happy you found us ! My name is and I am mom to twins Annemieke (ds) and Arielle. We live in Lexington, KY with my DH Marc. There is another set of fraternal twins both with DS on this list. There are also several sets of multiples where one has DS, like ours. And we have some sets of identical twins too. The list is kind of quiet this summer with everyone so busy, but I know they will all want to welcome you. I hope to hear more about your family as you find the time. Here is our story ... Marc and I had been in IF treatments for about a year (after "trying" for the previous 3 yrs.) when we finally got pregnant. At 11 weeks we found out we were having twins. The pregnancy went very well, I never even went on bed rest. The girls were born at 36 weeks to the day by C-section . After I woke up and, if I remember right, before I even saw the girls, my Dr. came in to tell us they suspected Annemieke (On-a-meek-a) had Downs. We were is serious denial for a week or so until the test came back and confirmed she did have Downs. My DH is an engineer and information was the only way he could deal with the news. At the time I didn't want to hear any of it. No amount of information changed the fact I now had 2 babies to take care of plus myself post surgery. We were lucky in the fact that both girls are very healthy. Mieke had tests for all the potential problems. Even her eyesight is good for now. I have been working with her therapists (OT, DI and Speech) and she is coming along well. The only area we are really concerned about would be speech. But she is signing some and saying some words. She does not want to be left behind at all. -----Original Message-----From: & Alison Whittington Sent: Saturday, July 27, 2002 4:36 AMTo: Multiples-DS Subject: New Members Hi my name is Ali, my husband is . We live in Auckland, New Zealand and have four children, who is 10, Ben who is 4 and and who are 4 months old. and have DS. Before they were born we thought they were fraternal. However when they were both born with DS it was assumed that they were identical. As the days have gone by they have looked less alike and we had a zygote test carried out. The result is they are not identical but fraternal!!. We thought identical twins with DS was unusual enough but non identical twins both with DS must be even more unusual. Does anyone have stats on these?. Both boys are well. They were born 6 weeks prem and both have heart defects. has a partial AV Canal and has an ASD. We are still getting used to the idea that they both have DS. They are very easy babies which is a wee bit of a consolation. I look forward to hearing from members. Ali Whittington.http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Hi Alison, Its great to see you have made it here.The parents on this list are all wonderful .Their is another set of fraternal twins on here both have DS. I do not corresspond a lot but read the messages . There is 3 of us on here from Auckland Carolyn,(was down the line now Auckland) and myself. Easterbrook mum to Kane 14 yrs(Auckland rep for Inline and Ice) Sian 11 yrs (going on 25),Skye(DS) and 8yrs. New Members Hi my name is Ali, my husband is . We live in Auckland, New Zealand and have four children, who is 10, Ben who is 4 and and who are 4 months old. and have DS. Before they were born we thought they were fraternal. However when they were both born with DS it was assumed that they were identical. As the days have gone by they have looked less alike and we had a zygote test carried out. The result is they are not identical but fraternal!!. We thought identical twins with DS was unusual enough but non identical twins both with DS must be even more unusual. Does anyone have stats on these?. Both boys are well. They were born 6 weeks prem and both have heart defects. has a partial AV Canal and has an ASD. We are still getting used to the idea that they both have DS. They are very easy babies which is a wee bit of a consolation. I look forward to hearing from members. Ali Whittington.http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 This didn't seem to post the first time. -----Original Message-----From: and Marc deBloois Sent: Saturday, July 27, 2002 2:16 PMTo: Multiples-DS Subject: RE: New Members Welcome !! I'm so happy you found us ! My name is and I am mom to twins Annemieke (ds) and Arielle. We live in Lexington, KY with my DH Marc. There is another set of fraternal twins both with DS on this list. There are also several sets of multiples where one has DS, like ours. And we have some sets of identical twins too. The list is kind of quiet this summer with everyone so busy, but I know they will all want to welcome you. I hope to hear more about your family as you find the time. Here is our story ... Marc and I had been in IF treatments for about a year (after "trying" for the previous 3 yrs.) when we finally got pregnant. At 11 weeks we found out we were having twins. The pregnancy went very well, I never even went on bed rest. The girls were born at 36 weeks to the day by C-section . After I woke up and, if I remember right, before I even saw the girls, my Dr. came in to tell us they suspected Annemieke (On-a-meek-a) had Downs. We were is serious denial for a week or so until the test came back and confirmed she did have Downs. My DH is an engineer and information was the only way he could deal with the news. At the time I didn't want to hear any of it. No amount of information changed the fact I now had 2 babies to take care of plus myself post surgery. We were lucky in the fact that both girls are very healthy. Mieke had tests for all the potential problems. Even her eyesight is good for now. I have been working with her therapists (OT, DI and Speech) and she is coming along well. The only area we are really concerned about would be speech. But she is signing some and saying some words. She does not want to be left behind at all. -----Original Message-----From: & Alison Whittington Sent: Saturday, July 27, 2002 4:36 AMTo: Multiples-DS Subject: New Members Hi my name is Ali, my husband is . We live in Auckland, New Zealand and have four children, who is 10, Ben who is 4 and and who are 4 months old. and have DS. Before they were born we thought they were fraternal. However when they were both born with DS it was assumed that they were identical. As the days have gone by they have looked less alike and we had a zygote test carried out. The result is they are not identical but fraternal!!. We thought identical twins with DS was unusual enough but non identical twins both with DS must be even more unusual. Does anyone have stats on these?. Both boys are well. They were born 6 weeks prem and both have heart defects. has a partial AV Canal and has an ASD. We are still getting used to the idea that they both have DS. They are very easy babies which is a wee bit of a consolation. I look forward to hearing from members. Ali Whittington.http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Hello Ali and welcome to the group! My name is and my husband and I have 5 children. We have Beth-14, -13, Kimber-7 and then Hannah and -26 mos. was the only one of my twins that had DS. It's really wild that your boys are fraternal and both of them have DS. I don't have any stats on this, but I would think it's fairly rare. How are the boys, other than the heart defects? This must be very hard for you and your husband to swallow. I'm looking forward to getting to know you and your family better. & Alison Whittington wrote: Hi my name is Ali, my husband is . We live in Auckland, New Zealand and have four children, who is 10, Ben who is 4 and and who are 4 months old. and have DS. Before they were born we thought they were fraternal. However when they were both born with DS it was assumed that they were identical. As the days have gone by they have looked less alike and we had a zygote test carried out. The result is they are not identical but fraternal!!. We thought identical twins with DS was unusual enough but non identical twins both with DS must be even more unusual. Does anyone have stats on these?. Both boys are well. They were born 6 weeks prem and both have heart defects. has a partial AV Canal and has an ASD. We are still getting used to the idea that they both have DS. They are very easy babies which is a wee bit of a consolation. I look forward to hearing from members. Ali Whittington. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 Hi Ali - Welcome to the List!!! Wow, I thought your little guys were identical twins - pretty amazing to find out they are not!! We have one mom here, Char, w/fraternal b/g twins who both have DS - one is mosaic and the other is T21 (Char, forgive me but I can't remember at the moment which baby has which!). The only other case of fraternal twins w/DS that I've even heard of in the US is a family from the Denver area. Shortly after my boys came home from the hosptial, they were on TV w/their story (as I believe they were the first know set of fraternals in the US to both have DS). I'm not sure if they belong to this list or not. They are probably about 7-8 years old now! I'm Judi - Mom to Sam & , 5 1/2 year old identical (we are assuming, since we've never had zygosity testing done on them!) twins w/DS. They were 26 weeker preemies, born weighing slightly over 2lbs each. We got their DX of DS when they were about 1 month old - to say we were shocked is an understatement! They spent 16 and 18 weeks in the NICU and with a few bumps in the road healthwise in those early months, they are appy, and healthy little guys! They are going to start Kindergarten on the 19th of August!!! Sam and are our only children - I don't know how you do it w/others at home!!! Hopefully your older children are a big help to you!! I look forward to hearing more about your family!! Judi --- & Alison Whittington wrote: > Hi my name is Ali, my husband is . We live in > Auckland, New Zealand and have four children, > who is 10, Ben who is 4 and and who > are 4 months old. and have DS. > Before they were born we thought they were > fraternal. However when they were both born with DS > it was assumed that they were identical. As the > days have gone by they have looked less alike and we > had a zygote test carried out. The result is they > are not identical but fraternal!!. We thought > identical twins with DS was unusual enough but non > identical twins both with DS must be even more > unusual. Does anyone have stats on these?. Both > boys are well. They were born 6 weeks prem and both > have heart defects. has a partial AV Canal > and has an ASD. We are still getting used > to the idea that they both have DS. They are very > easy babies which is a wee bit of a consolation. I > look forward to hearing from members. Ali > Whittington. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Congratulations Ali and . My twin boys, Beckett & , are fraternal with having DS. I do know of a gal in Seattle, Washington who is also on this list who has fraternal twins with DS, a boy and girl. Hopefully she will respond to your e-mail. I've only heard of one other case in the US. It's definitely a rarity! Twins are quite a handful. My boys are just now 6 months, although they too were 6 weeks premature. I am still trying to find sleep! Good luck. - USA -----Original Message-----From: & Alison Whittington Sent: Saturday, July 27, 2002 1:36 AMTo: Multiples-DS Subject: New Members Hi my name is Ali, my husband is . We live in Auckland, New Zealand and have four children, who is 10, Ben who is 4 and and who are 4 months old. and have DS. Before they were born we thought they were fraternal. However when they were both born with DS it was assumed that they were identical. As the days have gone by they have looked less alike and we had a zygote test carried out. The result is they are not identical but fraternal!!. We thought identical twins with DS was unusual enough but non identical twins both with DS must be even more unusual. Does anyone have stats on these?. Both boys are well. They were born 6 weeks prem and both have heart defects. has a partial AV Canal and has an ASD. We are still getting used to the idea that they both have DS. They are very easy babies which is a wee bit of a consolation. I look forward to hearing from members. Ali Whittington.http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 HI Ali , I am . We live in Georgia,USA. My husband Rusty and I have a daughter 8years old and a son 4years old.. Both are biological ours and both have translocation 13(DS). Welcome to the group.. ,mom to and Dayton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Welcome Ali, My name is Katy and I have three kids, 5yr old and 2.5yr old twins and Tyler. Tyler is the only one that has DS. My twins were born at almost 37 weeks. I was first told about 30mins after the twins were born that Tyler had DS. He spent a week in the NICU because he could not maintain his body temperature and then be came jaundice. It took a while to adjust to the diagnosis but at this time I would not trade him for anything in the world. I do not get a chance to post much since I work fulltime, in the National Guard, and am going back to school to start a new career as a teach. Katy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Hi New Members! I'm Gail from New Jersey.......and have four children, Bobby is 8 1/2, Jillian is 6, and my twins, and Tara are almost 3 1/2. Tara was born with Ds. Tara also spent one week in the NICU, had poor APGAR scores, and couldn't maintain her core body temp. We too were shocked at birth. We are lucky that she did not have any " major " health problems with her heart or GI tract. My twins were born " term " at 39 weeks, was a natural delivery, Tara was a C-section...........glad thats over! Welcome to the Club! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 I have recently heard that many attorneys are not taking anymore cases. If this should happen to you file pro se [while lookig for an attorney] failing to file a claim immediately will result in the loss of your childs rights under the law. Currently one must file within 36 mo. of the first " table injury " ie if a child had a motor delay at 12 mo they would concider that as the start of the 36 mo. time frame. I realize that we parents werent privy to the list of " table injuries " and that many diseases have similar symptoms. I also understand that parents arent diagnosticians. This law was intentionally put in place to screw the vaccine injured out of being compensated. If there is any question in your mind file. Otherwise your rights under the law will be terminated. here is the info. http://www.hrsa.gov/vaccinecompensat...ling_claim.htm I will re post this thread every week so as new people will have the resources to preserve thier rights so please be patient. Also note you must file even if you have not recieved an official diagnosis as of yet. Any delay in development is used by the gvt. as a start point on your 36 months. For those who have already been denied by the gvt. You may now file in state court. Good luck Quote Link to comment Share on other sites More sharing options...
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