Re: Hi Joyce

[Guest guest]

Joyce, I just want you to know what an inspiration you are to me. I think

you are such a wonderful person & mom. I was talking about you just last

nite to my sister telling her how you have helped me feel that my Rudy isnt

strange!! Its wonderful to have someone with an older child to look up to

since Rudy is 13 and one of the " oldsters " in the group. Thank you for all

you give.

mom to Rudy (ds) & 13, TJ 16

[Guest guest]

Thanks for your reply. I have booked another genetics appt now. I

think lots of different types genetic changes in the same area can

cause BPES. From what I've read " microdeletions " are associated with

learning difficulties and that's the change they told me she had got.

I suppose because of that I am always watching for her milestones.

It's silly really because she's the joy in my life and it wouldn't

matter to me - I'm just glad shes well because she was so poorly for

her first two months. I suppose I feel like I can deal with anything

if I just know what's coming but i also feel guilty that I think about

it.

Anyway, thanks for telling me about your family - How old are your

girls? I'm pleased to hear your niece is getting along fine now. All

the best to you and your family,

Leah and Abbie

In blepharophimosis , joyceaibitoye@... wrote:

>

> My name is joyce, I live in London near . Both my daughter

have

> BPES, they were both full term babies, Their cousin who is now 15

years old also

> a girl with BPES was born at 26 weeks and she is hale and hearty

with no

> developmental issues.

>

>

> The infertility issue is still been investigated, It will be best to

check

> with a geneticist.

>

> Joyce Tina and Mayowa

>