Another Claire with BPES

[Guest guest]

Hi, I'm the Mom of . I was just told of this chat group and

have spent a little time looking at the notes and hope to read the

rest to catch up. is 3 1/2 yrs old, very active

(headstrong), intelligent and happy. A little pest to her older

brothers, 8 and 4. She was diagnosed at 6 months and is the only

one in our family with BPES. We see the eye dtr twice a year. She

is very far-sighted and got glasses this last year. She is also

very light sensitive and her eyes dry out-thus we put in eyedrops

before she goes to bed. She does favor one eye more than the other-

and usually just has one eye open at a time-even indoors.

After reading some of the notes-I see some children have their eyes

patched alternately-I will ask the dtr about this to see if it will

strengthen her eyes-I worry about her eyesight getting worse if she

keeps one closed all the time. We visit the dtr again in Jan 2003.

I'm so glad I've found this group and am excited to read all the

notes to see what others have done, what luck they've had with

surgeries, etc...

Does anyone know of a website(maybe the BPES homepage mentioned in

an earlier note) that documents the different surgeries

alternatives/practices? I guess I want our eye surgeon to know the

latest and greatest methods!!

The photo file is encouraging and I thank the parents who were brave

and put their child's photo out there to encourage others. Thanks!

's Mom, Sheila

[Guest guest]

Hi my name is Jeannette and I have two daughters with bpes I have a 2 year old daughter and a 8 month old daughter who inherited this syndrome from their father. My girls are doing well the 2 year old is not going to have to need surgery anytime soon although we recently found out she has astigmatism due to the Blepharophimosis. My 8 month old daughter is going to need surgery in the next couple of months and she also has hearing loss and we are trying to find someone to help us pay for her hearing aids which cost $1,000 dollars each. But I hope that through this group I can make it through this difficult surgery. My mother in law know what we are going to go through because my husband went through the same surgery; and the procedures haven't changed much. Jeannette Ruiz---gmojeannette@...

"collingwoodbarn <mathias@...>" <mathias@...> wrote:

Hi, I'm the Mom of . I was just told of this chat group and have spent a little time looking at the notes and hope to read the rest to catch up. is 3 1/2 yrs old, very active (headstrong), intelligent and happy. A little pest to her older brothers, 8 and 4. She was diagnosed at 6 months and is the only one in our family with BPES. We see the eye dtr twice a year. She is very far-sighted and got glasses this last year. She is also very light sensitive and her eyes dry out-thus we put in eyedrops before she goes to bed. She does favor one eye more than the other-and usually just has one eye open at a time-even indoors. After reading some of the notes-I see some children have their eyes patched alternately-I will ask the dtr about this to see if it will strengthen her eyes-I worry about her eyesight getting worse if she keeps one closed all the time. We visit the dtr again in Jan 2003. I'm so glad I've found this group and am excited to read all the notes to see what others have done, what luck they've had with surgeries, etc...Does anyone know of a website(maybe the BPES homepage mentioned in an earlier note) that documents the different surgeries alternatives/practices? I guess I want our eye surgeon to know the latest and greatest methods!!The photo file is encouraging and I thank the parents who were brave and put their child's photo out there to encourage others. Thanks!'s Mom, Sheila