Daughter with Bleph

[Guest guest]

I know how you feel. I was at a restaurant with my family and my brother

and his family. We were eating breakfast and the hostess was seating

another family. She sat them right next to us. I saw this little boy and

noticed his eyes. I didn't want to stare, but i couldn't help but look. I

finally walked around to his table and said something to him. His son

hadn't had any surgery yet. We found out that our kids went to the same eye

doctor and same surgeon. He was relieved to see my oldest son, since he is

finished with his surgeries. It made him feel good about the surgeon. My

youngest had just had his epi. surgery and it still looked " fresh " , but the

guy was still so excited to have met another family with the same thing.

When we were talking we found out we live 15 mins from each other and they

we may even be related.

It definetly does make it nicer to be able to actually meet people with the

some condition.

I'm happy that you were able to meet someone.

[Guest guest]

It has been quite a while since I last posted a message here on this

board so to just update everyone I have a 23 month old daughter with

bleph. We are not sure where she inherited this as neither of us

are aware of it on either side of our family. Like most of you we

were shocked when our daughter was diagnosed as a newborn. We live

in Iowa and had looked online to meet people closeby that we could

relate to. This site was the closest thing to it. I have an

amazing story that I think that only people here can appreciate

because you understand what I am going through better than my friend

or even my family. I was at a thing here at our fairground called

KidsFest today and as soon as we got inside of this enormously

packed building I needed to go to the bathroom so headed there

first. I was drying my hands next to the changing station and I

happened to glance over at the little girl next to me. I instantly

noticed her small eyes, but I didn't want to stare. I looked away

but I couldn't keep myself from looking back and then I noticed the

folds on the inner eyelid. I looked at her mom and said " do you

mind if I ask you a question? " She looked at me like I was going to

be one of those rude people asking about her eyes but I said " does

your daughter have blepharophimosis? " Before she said anything

there was this long pause and she kind of had a puzzled look on her

face as she aswered yes. I told her that my daughter too had the

disease and ran out of the restroom to get her. We were both amazed

that with this disease being so rare that we ran into each other and

share so many similiarities. Are children are 2 months apart in

age, go to the same oculoplastics center, and live within an hour of

each other. It is nice to have this website/group to chat with

people and to look at pictures, but to actually be able to meet with

someone and have someone for my daughter to relate to as they grow

up brings joy to my heart. We exchanged numbers and plan on our

families getting together soon. I had to share my story with

someone because like I said, people who are not in our situations

don't appreciate what something like this means.

[Guest guest]

I am glad that you too have found someone that your family can

relate to. Do you mind if I ask how many kids you have and how many

have bleph?

Thanks.

Dana

> I know how you feel. I was at a restaurant with my family and my

brother

> and his family. We were eating breakfast and the hostess was

seating

> another family. She sat them right next to us. I saw this little

boy and

> noticed his eyes. I didn't want to stare, but i couldn't help but

look. I

> finally walked around to his table and said something to him. His

son

> hadn't had any surgery yet. We found out that our kids went to

the same eye

> doctor and same surgeon. He was relieved to see my oldest son,

since he is

> finished with his surgeries. It made him feel good about the

surgeon. My

> youngest had just had his epi. surgery and it still

looked " fresh " , but the

> guy was still so excited to have met another family with the same

thing.

> When we were talking we found out we live 15 mins from each other

and they

> we may even be related.

>

> It definetly does make it nicer to be able to actually meet people

with the

> some condition.

>

> I'm happy that you were able to meet someone.

>

>