We feel that there would be no real advantage putting such photos up on the website at the moment, as our little man to look at; looks like any normal child, his problems seem to be under his skin.
There are a few things that are noticeable on closer examination alright, his ears are slightly turned more, his has no bridge to his nose, he doesn't seem to have very visible nipples (however they are there), he has the straight line across the palm of his hand, that usually suggests a syndrome (We are told). I will try and get some pictures of these features and put them up on the website soon.
We would like to thank all the doctors, specialists, nursing and care staff that do incredible work everyday with our wonderful son. Without these amazing people, our son simply wouldn't be with us today. This website, can hopefully try and work alongside the wonderful work of these medics to get closer to a name for this syndrome..., and who knows it may even help some other parents, who are going through exactly the same with their child, to know there is also someone else out there, born with this condition. Someone to share information with.
When our son was born, our lives changed in a heart beat. Like most parents, you don't expect anything to be wrong with your baby, you know that there is always a little possibility that something could go wrong in every pregnancy, but I suppose deep down, you never think it will happen to you. But then he was born, and our world changed forever.
The fact & shock that our new baby was seriously sick & fighting for their life is one thing, but then to be told that their illness is a syndrome that they have never seen before, brings it to a totally new level..., this scares the hell out of you. Genetic consultants work hard to try and get answers over the months to come, but keep hitting dead ends. Meanwhile your child is being medically treated for individual problems that they know how to treat, but other things are happening, & they don't know why? You live in hope, that the doctors (who are trying their best) will find the reason why certain things are happening, but they don't, and as the months move on without answers, and the experiments continue (sometimes the same ones over and over again), it starts to feel like groundhog day, and you start to ask, what else can we do as parents to try and find out what this syndrome is, that is causing so many problems to our beautiful, smiling & laughing, son. Anything is worth it, hense raresyndrome.org was born.