Re: Re: Re: Australian members

[Guest guest]

Hi Jen

My daughter Bridget is now 2.5 years old. She was diagnosed with BPES at 9 days

old at the Childrens Hospital, Westmead. Her Dr is Professor ( his

offices are in Macquarie St Sydney). performed a bilateral eyebrow

suspension on Bridget when she was 4 months old. Its been a while since I posted

a photo , however Bridget looks great. The difference to her was immediate -

when she looked at us , it was with " wide-eyed' amazement! She was so excited

and started investigating her environment much more than she had before and she

has never once had to crane her neck to see us again. She is now a very cheeky

little girl and gets into absolutely everything!

We will investigate more surgery when she is about 4yrs old. The extra

skinfolds around her eyes mean that her peripheral vision is not great and we

are thinking ahead to when she needs to learn to play sport, drive etc etc. We

will definitely be going back to . He is wonderful and has a great

deal of experience in this area.

If you would like any other information - please feel free to contact me

directly at pcarmitage@....

Good luck

Catharine

> Clare Teale <clareteale@...> wrote:

>

> Hi ,

> Just thought Id jump in with a quick hi, I live in UK at mo.  My sister

> lives in Eltham, Melbourne, Aus.  Me and my daughter have BPES, we are

> coming next year (2010) to visit, would be great to meet up with a few

> people from this site.  I know its a long way off, but saw your mail

> and by the time I get to reply next year would have probably forgotten,

> how to get in contact.

>  

> Have a great weekend.

> Clare Teale, Herts UK

>

>

>

> From: <claire.haun@...>

> Subject: blepharophimosis Re: Australian members

> blepharophimosis

> Date: Thursday, 15 January, 2009, 2:11 AM

>

>

>

>

>

>

> Hi Jen

>

> I have Bleph as does my 1 year old daughter. We are in the outer

> eastern suburbs of melbourne.

> Please feel free to send me an email and we can have a chat.

> Where abouts in Aust are you?

> Welcome to the site!!!!

>

> (Oz)

>

>

> >

> > Hi, I am a new Australian member of the site and am so glad to have

> > found it. I have BPES and until the birth of my son last year had

> never

> > come across another person with eyes like me. I was wondering if

> there

> > were any Australian members who wouldn't mind talking with me about

> > their experiences and maybe local options for surgery?

> > Thanks

> > Jen

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>