Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Hello Francesco I hope your visit on the 7th goes well. I would also be interested to hear how things go for Caterina it helps us to learn what to expect. Good Luck! Donna > > > > > > > > Hi, > > > > > > > > My name is Donna and I have a 15 month old boy, who has > > > BPES. > > > > is a beautiful, happy baby who we love very much and he > > > seems to > > > > have a knack for making everyone who meets him fall in love > with > > > him. > > > > He has a 4 year old sister and they adore each other. > > > > > > > > He is the first in the family with BPES, so until he was born > we > > > had > > > > never heard of it. It is nice to read messages and hopefully > > > learn > > > > from everyones experiences. > > > > > > > > has only recently started crawling and standing and we > > have > > > been > > > > told by the drs. that this is normal for someone with BPES as > > > mobility > > > > can be late to develop - did anyone else experience this? > > > Although > > > > now he is coming on leaps and bounds. > > > > > > > > It has taken time for me to pluck up the courage to join the > > group > > > but > > > > I guess that I need to know more about the surgery he will > face > > > when > > > > he is older. > > > > > > > > We live in the UK and would be interested to hear from others > in > > > the UK > > > > so we can share information on doctors etc. > > > > > > > > Best Wishes to you all > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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