Roll Call

[Guest guest]

Hi all

I joined this list some months back but have never really posted to

it, although I've followed it with interest. Our son Dillon turns

six months tomorrow. He has BPMG and it is a very severe case. He

has not had a chance to develop at all as he has seizures most of

the time. No combo of drugs has so far helped for any length of

time. He lived at home with us for the first two months but has been

in hospital in London for the last four months, only coming home on

short visits when his seizures lessen. We also have a healthy and

happy two year old son, Noah. We visit Dill every day, and the team

of nurses looking after him are fantastic and doting. Dill was

recently assessed at Great Ormond Street children's hospital where

they told us they do not expect him to live beyond early childhood,

and often times would expect, given how he has been, that he would

not see his first birthday. Needless to say it's been difficult, and

at this point we don't know what to hope for. I'd be interested to

hear from anyone who has been in a similar position.

Carol, mum to Baby Dillon and Noah