greetings

[Guest guest]

greetings to all who read this. my name is terry. my wife karen and

i live in st louis with our daughter abigail who will be celebrating

her 3rd b-day tomorrow. i stumbled across a great website on BPES

the other day and it led me directly to you guys in the support

group. it was the first time since my daughter has been born that i

relentlessly wanted to find out more on her disorder. this group has

not only been a godsend, but also been extremely informational

through the emails i have read. abigail was born nov 17th, 2000 and

was diagnosed less than three weeks later.

several months into her life we took her to st louis CHILDRENS

HOSPITAL and saw a dr. greg luedder. greg is a surgical pediatric

opthamologist. he is one of the best. he has seen other cases of

BPES and was very thorough on what to do, step by step. abigail has

had two surgeries to lift the lids off of the pupils. the big

surgery is yet to come. he will take out the section of skin(on each

eye) from the inside corner to the bridge of her nose to make the

openings bigger. this will happen around the age of five.

as for abigail. we could not ask for a better child. all of the

possibilties of developemental issues that could go along with BPES

have not affected her. in fact its quite the opposite. she has been

talking in full sentences since the age of two and we are getting

pressure from the district to get her IQ tested.

as 30 year old parents we, like all of you, were shocked and scared

when abigail was born. now, we would die without her. on behalf of

my wife i want to say how happy we are to have found all of you and

look forward to sharing pictures. the before and after of some of

these are incredible and they give us great hope. like all of you,

we will do whatever it takes to provide abigail with the highest

quality of life.

regards to all from st louis

terry and karen