Guest guest Posted June 10, 2007 Report Share Posted June 10, 2007 Welcome!! Your friend is very lucky to have you! Kim Mom to Mia 16 months MDS IMDSA Membership Chairperson www.imdsa.com A New Friend! Hi Everyone We have a new " friend " ! Here is what she had to say... A close friend of mine just had a baby with MDS. There is hardly anything in the web and I want to find out about what sort of development treatments are available Welcome to our Family! I am so glad you have joined us! You are right there is very little information on mosaic Down syndrome. International Mosaic Down Syndrome Association is the only organization in the world dedicated to providing support, information and research to those touched by mosaic Down syndrome. Please feel free to ask any questions you have on MDS. We will all be happy to share our experiences with you. How is your friend doing and her baby? Please encourage her to join our support group. We can help her as well! Kristy Colvin IMDSA President & Conference Coordinator Mom to Arron 25, 22, Tim 21 MDS, Stevan 20, and Garrett 11 SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE! www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2007 Report Share Posted June 10, 2007 Thanks for the wonderful welcome. My friend's baby is just 12 months old. she seems to fine on fine motor skills but is lagging behind in gross motor skills and is not standing up yet and this is worrying my friend heavily. The other problem is that to our knowledge Sri lanka does not have any early intervention programmes . my friend and her husband are planning to come to US next year. In the meantime is there any place where she can find any material (books websites) so that she can start her own " home " early intervention? any help in this matter is highly appreciated. Thanks again HIPA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2007 Report Share Posted June 10, 2007 Hi Hipa I am not sure, but we may have some other families in Sri lanka. Our Family Connect Coordinator, Sylvia Wormley, will look into that for you and let you know. Most children with MDS walk around the age of 17 or 19 months. This could range higher or lower depending on the child. I do not know of any specific programs for motor skills, but our Occupational Therapist, Sharon Kaye, may be able to give you some ideas on where to go. (Even though she works in fine motor skills instead of Gross Motor Skills) I also imagine that many here can give some good, safe, tips on what they have done with their children for physical therapy. You can go to http://www.woodbinehouse.com/ for some great books on Down syndrome (not mosaic but some issues are the same) and Gross Motor Skills for children with Down syndrome (this is a highly recommended book by many) Keep us updated and feel free to ask any questions Kristy hipafernando wrote: Thanks for the wonderful welcome. My friend's baby is just 12 months old. she seems to fine on fine motor skills but is lagging behind in gross motor skills and is not standing up yet and this is worrying my friend heavily. The other problem is that to our knowledge Sri lanka does not have any early intervention programmes . my friend and her husband are planning to come to US next year. In the meantime is there any place where she can find any material (books websites) so that she can start her own " home " early intervention? any help in this matter is highly appreciated. Thanks again HIPA Quote Link to comment Share on other sites More sharing options...
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