Re: Update from visit to Genetic Clinic

[Guest guest]

Dear Lindi & family, I am losing any faith I had in the medical world to give we parents proper information! I can hardly believe that you have been lead to believe for this many years that had MDS if it was some other syndrome. I don't understand what happened. Did they not tell you Mosaic Down Syndrome? Anyway, I feel speechless and I am very sorry to hear of your resignation of treasurer of IMDSA. We seem to be losing people to misdiagnosis more than I think we should. I do hope you will keep in touch and let us know what you find out. My prayers and love go out to you and your family. I love your name Lindi Free, and I shall not forget to pray for you. Lots of Love, Barb Martz Mom to Jonas 1 (MDS) & 6 Update from visit to Genetic Clinic Just wanted to let you all know that we did take to the GeneticClinic on Dec. 13. As a reminder, these are the same doctors thatsaw her when she was born 11 years ago. Our goal in returning was tofind out about any new testing that might be helpful with adefinitive diagnosis....... what we have been wanting for 11 years!First we had to go through all we had done with testing in thelast 11 years, her weaknesses, strengths, our concerns, etc. When Imentioned that we had not tested her chromosomes since her birth, andthat we would like to know more clearly about the % for MDS......well, both doctors just looked at us. They then told us that 'sresults of 11 years ago did not confirm MDS at all. If it had shownMDS, that would have been easy to diagnos. Well, my husband and Iwere both shocked, needless to say. I told them that we were toldthat she had Mosaics. I then learned that for every syndrome, thereis a Mosaic, and there are mosaics for undetermined syndromes, whichis where we stand.We don't know if this is good news, bad news, or doesn't reallymatter news. We don't plan to change anything we are or have beendoing with and/or for . We just feel like we are in "limbo"again. As a result of the fact that does not have MDS, I feelit is my obligation to resign as the Treasurer of the IMDSA effectiveimmediately. I spoke with Kristy earlier this week and explainedthis to her, and about my plans to resign. I want to offer mysincerest apologies for the inconvience I know this will cause.However, I know with all the wonderful people in the group, there issomeone out there that will be perfect for the position.I will continue to read your postings, and wish the best to each ofyou in the new year ahead of us. I know great things will happen forIMDSA in 2002!I want to let you know that are awaiting new test results from bloodthat was taken from during our visit. The doctors had severalnew tests that they felt like might be beneficial for . She isalso now a part of a "research project" being conducted by several ofthe doctors in the clinic. We may not learn anything from that forseveral months or even a year. I will let you know what we learn, ifwe learn anything!My very best to each of you, always!Lindi Free Mother to (11), Kylie(8), and Madison who 1 year old yesterday!Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************