Guest guest Posted September 14, 2011 Report Share Posted September 14, 2011 Hi everyone! We have a new family joining us today. Here is what they had to say..... Good Morning, My name is and I am interested in joining this group becuase I have a 2 year old son that was diagnosed with Mosaicism at birth. My husband and I were in denial for the first 2 years and have now begun to accept that this condition is real and we need to do all possible to give our child the bset possible chance. I want to be able to connect with other parents and hear from them, what their lives have been like, since finding out. How did they cope? Did they immediately admit this disability to family and friends, if so, how? How do you stay encouraged, when you feel like you don't have any support, because not many people know about this condition and how it differs from Downs. How have their spouses reacted? I have so many questions, and just want to be able to get them answered by someone who is in my situation, and not by someone who can make suggestions, but have never lived it. I hope this explains why I would like to be a part of this group. I look forward to hearing from you soon. Thank you/ - M. Prather Welcome ! You have come to the right place to get answers. You have a lot of great questions for the egroup. I'm sure most of them will be willing to share their story, and help answer some of your questions. Thanks, Hellard President International Mosaic Down syndrome Association (IMDSA) P.0. Box 354~ Trenton ~ OH ~ 45067 1-888-MDS-LINK ~ 1- ~ (FAX) 1- http://imdsa.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2011 Report Share Posted September 14, 2011 Hi ! Our 16 month old son has very mild MDS, which was not discovered until he was a year old. I had a very difficult pregnancy and he was born 2 months early and had a few physical & developmental oddities (slightly upslanted eyes, even though no one else in our family has them; didn't roll over, sit up, or anything until 8months of age; had to have tubes put in his ears at 9months; no speech <he has only just started " babbling " a little>; larger than avg space between first and 2nd toe, and webbed 2nd & 3rd toe; low muscle tone & constantly open mouth with tongue hanging out, etc...) We didn't even know about Mosaic DS until he got evaluated by Early Intervention and OT asked me when he had been diagnosed with Down's Syndrome. I just looked at her and said, " Um... he doesn't have that. " She was quiet for a moment and then proceeded to describe to me all the DS characteristics he possessed, and suggested we get the genetic testing done. We are actually trying to get the 500 cell count done, because it is more accurate, but they don't do it here- we may have to go to the Children's Hospital in Birmingham, a couple hours away from us. He has a very mild form according to the 20 cell count, but his developmental delays are still so great that we would be more comfortable with a second opinion, so we can know how to go about treatment in the best way. He is in OT right now, and we are trying to get him in speech therapy also. Our area doesn't have the best resources, surprisingly, since it is a relatively large city. My husband actually took the news with something like relief. He and other family members always saw that something was not quite right, although they rarely said anything to me. (As Mommy, of course, he is absolutely perfect to me) He seemed relieved to finally be able to give a name to what was " wrong " with Caede. And we haven't shared with too many people, not because we are ashamed, but because it is not neccessary for them to know that he is " different " . Family knows, and some close friends. Not many people understand what MDS is- we just tell them he has a very mild form of Downs Syndrome, and that seems to suffice.  I'm still relatively new to the whole MDS thing, and learning new things every day. I will answer any questions you have to the best of my ability! Welcome to the group! Love, (mother to Gracie, 2, and Caede, 1, MDS)  To: imdsa <mosaicds > Sent: Wednesday, September 14, 2011 11:24 AM Subject: Welcome and her family!  Hi everyone! We have a new family joining us today. Here is what they had to say..... Good Morning, My name is and I am interested in joining this group becuase I have a 2 year old son that was diagnosed with Mosaicism at birth. My husband and I were in denial for the first 2 years and have now begun to accept that this condition is real and we need to do all possible to give our child the bset possible chance. I want to be able to connect with other parents and hear from them, what their lives have been like, since finding out. How did they cope? Did they immediately admit this disability to family and friends, if so, how? How do you stay encouraged, when you feel like you don't have any support, because not many people know about this condition and how it differs from Downs. How have their spouses reacted? I have so many questions, and just want to be able to get them answered by someone who is in my situation, and not by someone who can make suggestions, but have never lived it.  I hope this explains why I would like to be a part of this group.  I look forward to hearing from you soon.  Thank you/ - M. Prather Welcome ! You have come to the right place to get answers. You have a lot of great questions for the egroup. I'm sure most of them will be willing to share their story, and help answer some of your questions.   Thanks, Hellard President International Mosaic Down syndrome Association (IMDSA) P.0. Box 354~ Trenton ~ OH ~ 45067 1-888-MDS-LINK ~ 1- ~ (FAX) 1- http://imdsa.org Quote Link to comment Share on other sites More sharing options...
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