My photos.

[Guest guest]

Hi everybody !

Photos of me are now available on my photo album.

I would have liked to put more but I have to check on my computer

cos' they are too big and are eating 'our' personnal disk space

allowed.

I would like to thank who allows us to speak and see

each other here.

And also Rob who seems so skilled in the BPES issue !

Special thanks to lo(retta), Toinette (Toni) and a great great

hello to Mathias (that is really incredible, her family is living

here in France about 10 km from me !)

I'll write to you more in details as soon as I can. I promise.

I takes so much time to get info about BPES, I spent and still

spending hours reading and reading ... your posts, not only, but

other info on the Net.

I read Stayce's story ... it painfully reminds of mine.

I suffered a lot from stares at school, especially because my parents

and I did not know the disorder.

Now it is less important.

Only children now and then have a king of bad word, but I know now

what is my answer.

I am so happy to read that you parents are conscious of the

difficulty and take great care of your babies, especially on surgery

and everyday care concerns.

I was to be operated for the third time when I was a teen, but my

parents delayed it and it has not yet been done.

Their major problem I think was they tried to 'make without', to

delete there was something.

In a way they tried to hide me, making me feeling I was sometimes a

plague-stricken child.

I suffered from incomprehension even in my own family. From uncles,

aunts & young cousins and now and then I still have remarks about my

small eyes and my being different.

I was a quite shy girl, maybe this did not help at school, I could

have done more successfully.

Like Stayce I frenquently came from school crying, my mother did not

always find the right words to calm me.

As I grown I realised all these things but did not want ot see the

reality.

Now I see it clearly and I must tell we are to be proud.

We can live and act like other 'normal people' ... and we are

beautyfull.

When I look at your photo albums, I see pretty girls and boys.

With my expereince I have developped great sensibility to others

(maybe too much ?!) and now I want to do something for french

speaking BPES all other the world.

I am thinking about creating a site with a forum or something and I

will become someone engaged in the knowledge and info for french or

other french speaking families.

Thank you for reading me.

See you soon,

Lau.

[Guest guest]

Lau

Have a great day today!

Loretta

Fidgi <thalie38@...> wrote: Hi everybody !Photos of me are now available on my photo album.I would have liked to put more but I have to check on my computer cos' they are too big and are eating 'our' personnal disk space allowed.I would like to thank who allows us to speak and see each other here.And also Rob who seems so skilled in the BPES issue !Special thanks to lo(retta), Toinette (Toni) and a great great hello to Mathias (that is really incredible, her family is living here in France about 10 km from me !)I'll write to you more in details as soon as I can. I promise.I takes so much time to get info about BPES, I spent and still spending hours reading and reading ... your posts, not only, but other info on the Net.I read Stayce's story ... it painfully reminds of mine.I suffered a lot

from stares at school, especially because my parents and I did not know the disorder.Now it is less important.Only children now and then have a king of bad word, but I know now what is my answer.I am so happy to read that you parents are conscious of the difficulty and take great care of your babies, especially on surgery and everyday care concerns.I was to be operated for the third time when I was a teen, but my parents delayed it and it has not yet been done.Their major problem I think was they tried to 'make without', to delete there was something.In a way they tried to hide me, making me feeling I was sometimes a plague-stricken child.I suffered from incomprehension even in my own family. From uncles, aunts & young cousins and now and then I still have remarks about my small eyes and my being different.I was a quite shy girl, maybe this did not help at school, I could have done more

successfully.Like Stayce I frenquently came from school crying, my mother did not always find the right words to calm me.As I grown I realised all these things but did not want ot see the reality.Now I see it clearly and I must tell we are to be proud.We can live and act like other 'normal people' ... and we are beautyfull.When I look at your photo albums, I see pretty girls and boys.With my expereince I have developped great sensibility to others (maybe too much ?!) and now I want to do something for french speaking BPES all other the world.I am thinking about creating a site with a forum or something and I will become someone engaged in the knowledge and info for french or other french speaking families.Thank you for reading me.See you soon,Lau.