Re: Hello from Brussels, Belgium (new member)

[Guest guest]

Hi there,

Welcome to the group, I just looked at the pix of your daughter

Audrey, what a wee cutie:) Her eyes are so round and open now! How

are the scars from the incisions healing? Are they very noticable?

Our son Ethan (wearing pumpkin suit) just turned 3 years old 2 weeks

ago, he has had no surgeries so far, he will see the opthalmologist

in a few weeks for his 3 year old check up. He has never had to tilt

his head back to see, just raises his eyebrows:)Will post after his

appt...take care:)

leanne and family NZ

>

> Hello everyone from Brussels, Belgium.

>

> We have a wonderful and happy 1 year old called Audrey.

>

> She was diagnosed with BPES when she was 2 month old and she is

the

> first in our families with the condition.

>

> We met Dr Elfride De Baere and her team in Gent (Belgium) for the

> genetic & eyes tests.

> It appears that Audrey has the most common type of mutation.

> It's not yet possible to tell for sure if she has type I or II…but

> she's a healthy child and that's all what matters !!!

>

> She just had her first surgery performed by Dr Christian Decock in

> Gent (silicone sling suspension). It was highly recommended so her

> eyesight can develop properly.

> We posted some before and after pictures under Audrey's file.

>

> We're very happy with the results and can already tell it changes

her

> live to have such big eyes.

>

> We'd love to be able to meet some of you in London on the next

> meeting as well as our Belgian compatriots (Hello Jeroen).

>

> As soon as BPES was diagnosed, we heard about your group and it

was

> so good to know that we weren't alone, THANK YOU !!!

>

> Berengere (33), Johan (32) and Audrey (1)

>

[Guest guest]

Hello Berengere, Johan and Audrey,

Welcome to the group. It's nice to meet people from Belgium. Audrey

looks really great. Our son Jens (4) also recently underwent surgery

by Dr. Chritian Decock in Gent. I posted a postoperative picture in

the album. He underwent an YV-canthoplasty.

I myself was the first in my family with BPES. I have two children:

Jens, 4 years old who has BPES and Tiebe, 2 years old who is not

affected.

It would be nice to meet you.

Regards,

Jeroen (29), Anne (31), Jens (4) and Tiebe (2)

>

> Hello everyone from Brussels, Belgium.

>

> We have a wonderful and happy 1 year old called Audrey.

>

> She was diagnosed with BPES when she was 2 month old and she is

the

> first in our families with the condition.

>

> We met Dr Elfride De Baere and her team in Gent (Belgium) for the

> genetic & eyes tests.

> It appears that Audrey has the most common type of mutation.

> It's not yet possible to tell for sure if she has type I or II…but

> she's a healthy child and that's all what matters !!!

>

> She just had her first surgery performed by Dr Christian Decock in

> Gent (silicone sling suspension). It was highly recommended so her

> eyesight can develop properly.

> We posted some before and after pictures under Audrey's file.

>

> We're very happy with the results and can already tell it changes

her

> live to have such big eyes.

>

> We'd love to be able to meet some of you in London on the next

> meeting as well as our Belgian compatriots (Hello Jeroen).

>

> As soon as BPES was diagnosed, we heard about your group and it

was

> so good to know that we weren't alone, THANK YOU !!!

>

> Berengere (33), Johan (32) and Audrey (1)

>

[Guest guest]

Hi Jeroen

Wow, what a fabulous result, Jens looks amazing! I am feeling more

at ease about Kirsten's YV-canthoplasty which is scheduled for June.

Regards

Parsons

> >

> > Hello everyone from Brussels, Belgium.

> >

> > We have a wonderful and happy 1 year old called Audrey.

> >

> > She was diagnosed with BPES when she was 2 month old and she is

> the

> > first in our families with the condition.

> >

> > We met Dr Elfride De Baere and her team in Gent (Belgium) for

the

> > genetic & eyes tests.

> > It appears that Audrey has the most common type of mutation.

> > It's not yet possible to tell for sure if she has type I or II…

but

> > she's a healthy child and that's all what matters !!!

> >

> > She just had her first surgery performed by Dr Christian Decock

in

> > Gent (silicone sling suspension). It was highly recommended so

her

> > eyesight can develop properly.

> > We posted some before and after pictures under Audrey's file.

> >

> > We're very happy with the results and can already tell it

changes

> her

> > live to have such big eyes.

> >

> > We'd love to be able to meet some of you in London on the next

> > meeting as well as our Belgian compatriots (Hello Jeroen).

> >

> > As soon as BPES was diagnosed, we heard about your group and it

> was

> > so good to know that we weren't alone, THANK YOU !!!

> >

> > Berengere (33), Johan (32) and Audrey (1)

> >

>