Trying to get use to the idea that my little angel has BPES

June 7, 2007

Hello to all. I am new to this group and still trying to figure out

how things work around here.

My daughter was diagnosed on June 5, 2007 with blepharophimosis

syndrome. She had all four characteristics that go along with this

syndrome. The day I delivered her I kept asking the doctors is there

something wrong with her eyes? They kept reassuring me that this was

just how she was made. Deep down I knew something was different.

It's only been one day since she was diagnosed. I have my ups and

downs. I realize that things could be so much worse, but it's still

hard for me to keep the tears in. Not b/c I think of her any

differently, but it's something that she will have to face all her

life. I'm trying to be strong, but right now I feel so weak and

thought maybe it would help to talk to other parents going through

what I am. I am going to try and post some pictures of her. Her name

is Macey Hamilton.

June 7, 2007

Hi Awdrey,

As I read your email, all the memories of how I felt when I had Naomi

came flooding back. The initial puzzled feeling, then frustration as

to why I'm the only one suspecting there's something 'wrong'...then

of course, the actual heart wrenching diagnosis. It was a sense of

sadness yet relieve for me... knowing that the mystery is solved but

now I have reality to deal with.

It's been 4.5 years now and I'm happy to share that Naomi is a happy,

well balanced child who think she's cute, lol!!

She has not had any surgery yet but we suspect any time next year as

she's finally tall enough. In the meantime, her lids are held up with

surgical tapes. She is long sighted so she wears glasses. You may

view her photos if you like, they are under Naomi Chang.

You've come to the right place for support, ideas and friends : ) I

met loads of very nice people here.

Take care and hugs to Macey.

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