Re: looking for other families

[Guest guest]

Hi Kerry,

Welcome. I know of BPEI-enhanced folks (besides me) in Sydney, Brisbane,

Canberra and Parkes, but (until now) not in any other states.

Feel free to drop me a line any time. My e-mail address is

rawatson@... .

Some years ago we went to Melbourne to see an eye surgeon to get an

opinion on our son's trichiasis. He was a good bloke: Buchanan, I think?

(don't quote me on that - it's been a while).

Regards

Rob

(Syd-er-ney.)

kerry bennett wrote:

> Hi my name is Kerry and I am looking for other families that

> have children with Blephs that live in Australia especially in

> . I have a daughter and a husband with this condition and it

> can be traced back generations and generations. So if there are any

> families in this part of the world please e-mail me I would love to

> hear from you.

>

>

> Hope to hear from you soon.

>

> Kerry

[Guest guest]

Hi Kerry.. sorry i am not from Ausi but here in NZ... I have a 4 year ols son Ethan who has BPES and i had never heard of it until he was diagnosed with it..neither my partner or i had any idea where it comes from in our generations, and as we have now seperated i am dealing with it all on my own basically...keep in touch if you want.. Love Leah

blepharophimosis looking for other families

Hi my name is Kerry and I am looking for other families that have children with Blephs that live in Australia especially in .

I have a daughter and a husband with this condition and it can be traced back generations and generations.

So if there are any families in this part of the world please e-mail me I would love to hear from you.

Hope to hear from you soon.

Kerry

Find local movie times and trailers on Movies.

[Guest guest]

> Hi my name is Kerry and I am looking for other families

that have children with Blephs that live in Australia especially in

.

> I have a daughter and a husband with this condition and it can be

traced back generations and generations.

> So if there are any families in this part of the world please e-

mail me I would love to hear from you.

>

>

> Hope to hear from you soon.

>

> Kerry

> HI Kerry,

>

>My name is Fiona,we have a 10 month old son with BPES. was

diagnosed at only 3 weeks. We have two other sons, 5 and

3. is the first in our family with BPES,and no other

family history. We're from PARKES (central west) NSW. had his

first operation only 9 weeks ago in The Sydney Childrens Hospital at

Randwick.

We are very pleased with the result. He had a double ptosis repair,

using silicone slings.

Hopefully this will last until he's 2.5-3years old.Then he'll have

his second surgery.Firstly correcting his epicanthus inversus and then

re- do the ptosis again.

We are actually very lucky in that so far only seems to be

effected by his eyes.There are no other physical or developmental

problems at this stage.

I would really love to hear from you.Do you know much about this

condition? How old is your daughter? Has she had much surgery?

I would love to talk more.

FIONA.