pthrlisa
08-11-2007, 05:37 AM
Both of our girls were dx as being very low carriers of Fragile X. Last night the geneticist called from the Mind Institute of CA. They are the leading researchers of FX. My friend's dk's are being treated there and she told them about our dd's and how even though they are low repeats they have a lot of the physical and behavior traits of a higher carrier. The girls have now been put into their system and she told me it will take a year for a reg appt :thud: BUT they are looking into doing a study about low carriers like the girls and if/when they do our girls will be part and that may take 3 months then. I just want something to help them/me teach them better and when they do have cure (they are close) for it the girls to get it so they won't pass it to their kids. It was nice to hear I wasn't crazy like our reg dr thinks I am. Because of the low carrier repeat he's told me they DO NOT have symptoms at all ~ uhhhh why do you think it was requested that they be tested? :hmm: