Guest guest Posted May 6, 2005 Report Share Posted May 6, 2005 Hi Everyone! I am writing from Sydney Australia. I dont know if this is just an American group or not but I am finding it hard to get any information here in Sydney. My soon to be 1 (next week) year old daughter Jasmine has just been clinically diagnosed with RSS and we are now waiting on blood test results as well. My husband Wayne and I also have a little 4 yr old boy as well named Jaidyn. We are looking up websites and any other information we can get, though it seems to all come to a dead end. We have been to the genetician and they are looking at seeing her in a year and the paediatrician is really not coming across as full of information.I know an Endocrinologist is a must though trying to get someone who is familiar with this is hard. I found the MAGIC Foundation website fantastic and the Convention seems fabulous! I was reading a message from regarding people asking about size etc and that is so common for myself too. Everyone assumes she is premmy and when you say no they look at you as if to say " well whats wrong with her " or " I'll take her home and feed her up properly " . It can be quite distressing. Jasmine is now 12 months and currently at 5.6 kilos. She is an absolute beautiful little girl and as soon as I have more time I will send a picture through. I looked at the photo album and they are all cuties!! Hopefully there is someone who knows someone in Australia or has some information to help us out. Kim Quote Link to comment Share on other sites More sharing options...
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