If you're reading this then best bet is YOU ARE THERE! Great! I just wanted to tell a little about myself and why I'm here.
I stumbled upon this site while googling up more information about Fraser Syndrome (which I was born with).
What I found here is a bit upsetting, speaking about people who were born with Fraser Syndrome as though they're not 'normal'. But I'll put my pride aside and save you from having to read my rant. Why? Cause I'm nice :)
Now, for anyone out there who are a parent or related to anyone with Fraser Syndrome in anyway, I'd like to give you a tip. Possibly the most important tip you'll ever receive.
Here it is: We just want to be treated equally.
That SHOULD be applied to anyone with a rare condition. We are/will be hammered down daily by the judgmental stares and whispers of the (cruel) public.
It's something we have to accept and get through, but having a nonjudgmental and proud family on our side helps tremendously.
So please, just be grateful for the life that has been gifted upon your lap. Do not be ashamed and do not grieve for the fraser fellow.
Be as encouraging as you can.