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Anyone still active on here?

rkvv0720 Message
18 Oct 2015, 01:06 AM

Hi. Is anyone still active on this group? I just learned that my son has Fraser's Syndrome and it is so hard to find any information. Hope to hear back from someone!!
AndrewJ Message
18 Oct 2015, 07:36 AM

Hi rkvv0720 My first child died in 1991 the same day he was born.I also lost another boy at 17 weeks into the pregnancy. Our family has been written up in a genetic document.What other questions would like to ask? I think they have only found a few of the genes, Professor Scambler from the UK maybe able to tell you more in this regard. kind regards Glenda
AndrewJ Message
18 Oct 2015, 07:37 AM

I come from Sydney Australia.
rkvv0720 Message
18 Oct 2015, 11:07 AM

Hi all. Thank you for responding. My son at 18 months old was just diagnosed with Frasers syndrome. We are 32 weeks pregnant with our second child and learned that there is a chance he will have it as well. I can only find minimal information on the syndrome and was hoping to be able to get more.
Rhyleesmom Message
19 Oct 2015, 04:26 PM

Hi there I have a group on facebook called "Fraser syndrome/cryptopthalmos families" with a few different families who may be able to answer more questions for you. My daughter is 3 and has fraser syndrome. Our group is here for you. We are all facing similar challenges :)
AndrewJ Message
20 Oct 2015, 07:50 AM

Hi I am on Facebook under Glenda Song if you send me a message I will give you my email address , what is your first name.
Rhyleesmom Message
22 Oct 2015, 05:11 PM

I tried adding you but I cant find you when I search. Just try searching the group. My name is Melissa :)
Chris62 Message
10 Dec 2015, 06:49 AM

Hi I just joined that group Glenda. I just had fb message today from a mum who has four year old son affected. So thought i would google Frasers again to see what is happening. They have isolated the gene on Chromosome 4. Can have genetic testing done to see if a carrier etc. So i suppose they might be able to do genetic testing when pregnant. please let us know when baby has safely arrived. Your welcome to email me chris@chrismcqueenimages.com. Glenda we haven't spoken for years. Hope you are well? I live in Kyogle now. Moved back closer to the farm. But live in town as I am photographer and have studio room here. After everything I went through I now specialise in newborn photography. I am also Heartfelt photographer for Northern Rivers. http://www.heartfelt.org.au/ i think after the loss , being a registered nurse and pro photographer I was made for heartfelt. Is heart breaking at times...
ellebee777 Message
11 Dec 2015, 04:14 PM

Thanks for all this info! We have an amazing nine year old daughter with Fraser Syndrome. I was just googling "support groups" last night and found this. I know that there will come a day when she will want to feel like she's not alone! I will check out the facebook group.