Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 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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