Phocomelia

mackiemunster

Hello,

I'm the principal designated carer of an 11yr old little boy in India. I spend most of my time there, but am in Ireland because of visa changes, at present.

the little boy was born with Phocomelia and has a left leg that is missing it's femur bone and no right leg. He has a small stump for a right arm and nothing on the left side.

His health is good - & apart from usual childhood illnesses...chicken pox, mumps, colds etc.. he is in good health. He says sometimes he has kidney pains - and we put it down to the climate and that perhaps he has not had 'time' to go to the toilet - and waits until the very last minute as he doesn't want to leave the computer game he's playing. He's been reared to be independent by me and can do so many things for himself it's not true! He has a great mind and doesn't need any major assistance whatsoever now, thank God! The world thinks a small disabled child is cute - not so when he becomes adult.

A couple of years ago he developed a soft lump half way down his spine - though it moves and seems not to be attached - doctors said it was nothing to worry about. In the almost ten years I've had him, his trunk has grown only about two or so inches, perhaps a little more. His torso is about the size of a two-to three year old

I am not only anxious at present because I am away from him and he is not having a good time at all, where he is staying - but I've been told more than once that his life expectancy would be limited.

I'm only wondering if anyone has any experience with children with Phocomelia and could point me in a good direction where I might make some further research.

I thank you for responding to this post,

blessings to all

M

Gordon

Hi there, this is a helpdesk for boards.ie related issues. We have many forums where communities of people chat and discuss stuff, so I can move this thread to a forum where people chat and discuss stuff that's more pertinent to your thread. Although I'm not sure what forum is best, I'll try my best and forward this on to a more appropriate forum.

Mods, apologies if I've got the wrong place, please move if you can find a better home for it!

mackiemunster

It's a physical disability Gordon - do you have a health thread, pediatrics, or anything like that?

Capt'n Midnight

What threw me was the word research otherwise I'd have moved to long term illness.


Do you mean
research into the illness itself / what causes it ?
research into treatments ?
research into care ?
or just how people in similar circumstances get on with day to day stuff ?

boards doesn't do medical advice but the two forums below might be suitable
There are plenty of dedicated medical web sites out there.


This is the long term illness charter
http://boards.ie/vbulletin/showthread.php?t=2055015745

This forum is for the discussion of Long Term Illnesses and the issues related to these subjects.

* This forum is not a source of medical advice. It's a place for asking questions like "I have condition y, anyone else share this?", NOT "I have condition x, what should I do?". Posts like this will be deleted.

This is the Health Sciences charter
http://boards.ie/vbulletin/showthread.php?t=2055475288

Most people who use the biology+medicine forum are not doctors or nurses.

The forum is for discussion of biology+medicine topics in a general sense. It should not be used to ask for advice about your own personal medical issues.