why are there no adults with my sons bws?

[sie35]

my son has baristers-winter syndrome witch is a very rare brain disorder witch is part of the problem very little is known about it apart from it affecting learning and development and phisical abnomalitys im terrified as my son is now 4 he cant speak hes incontinant parchially blind ive not managed to find much information about baristers-winter syndrome because not many people have it just a handfull of kids no adults witch is worrying me about how long his life expectancy is going to be health wise hes not that bad he has a weak chest apart from that nothing life threatening but the brain is a weird thing not much is known about it my daughter deid from a rare brain disorder that was so rare it dident even have a name just her and a boy in austrailia had ever had it i took the decsition to turn her life support off the little boys parents dident he never recoverd my fear is i might have to do that again one day his condition is similar to downs syndrome what frightens me about that is you see adults with downs but there always quite young and ive never seen a old person with downs i cant ask his peadertritions because they dont really know and how can you ask parents of kids with downs how long are there kids going to live for its just not done but its playing on my mind so much id rather have some kind of indication just for my own sanity really

 

[sophxx]

I don't know if this helps my cousin has downs and lives in supported accimadtion as she has other
Problems due to lack of oxygen at birth and she 50 now there also adults older than her where she lives with it. X

 

[riuvn]

bad

 

[fairywings]

bad

??????

I am sorry your child has this. My son had a rare condition and I know how hard it is to not find information. I was lucky that I found a page one of the parents had started.

I googled it, and the oldest one I saw was 13, but like you say there is not really a lot of info on it besides what you have already said. I would not worry about asking the pead some questions as they will undoubtably know more than you expect. My son was the 6th in the UK with his condition ever and they knew enough to answer questions, from literature gathered from all recorded cases (at the time 56 worldwide)

Life expectancy is an important question, and there will be recorded literature somewhere that may just not be available online so I hope you do ask, you have the right to know.

 

[deafgal]

I hope you'll find something soon. Do you think your son can use little bit of sign language since he can't speak? There is tactile signing for people who are blind (many deafblind use this in their community)