BPES Meeting in London

[Guest guest]

Hi all, hope all preps for christmas are going well. Just a note to say thank you to Shireen for arranging another successfull get together in London on Sunday. It was fabulous to see everyone, and Emy and I had an excellent time, we have enjoyed meeting others, sharing stories and enjoying ourselves. We also took time to go for lunch and to shop. We even stopped until dark so we could see the lights in Oxford Circus. What a special day. I think this is a fantastic way forward for us as adults and our children, to give and recieve support that maybe we didnt get as children, there is no better feeling. Thank you to all of you and Shireen for continuing support through this network. Happy christmas to all and wishing everyone succes for 2006. Love and tinsle clare and emy

- Hertfordshire, UKLucy Chidgey <lcgosport@...> wrote: Hi Shireen Just a quick note to say that myself, Garry and little Holly will definitely be there, wouldn't miss another meeting for the world!! Looking forward to it. Note to Clare and Emy - I will bring copies of the photos we took last time for you to take home with you. I have some really nice ones. See you soon Lucy xxAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote: HiI would like to invite everyone to attend a get-together in London, UK.Date: Sunday 18th December 2005Time: 11

am (but no problem if you are late, as it is a drop-in coffeemorning)Venue: The Thistle Hotel, Train Station We held one of these in the summer. Five families came along, with parentsand siblings. I think there were 15 of us in total.I do hope you can join us for an hour or so.This date has been selected because it coincides with Ern, , Chloeand Naomi visiting London to see Mr Collin. They live in Singapore so Ithought it would be nice to plan a get-together around their short trip toLondon.Please let me know if you would like to come. No need to make a decisionjust now.RegardsShireen Messenger NEW - crystal clear PC to PC calling worldwide with voicemail __________________________________________________

[Guest guest]

I would also like to thank Shireen for organising such a great get

together on Sunday. I thoroughly enjoyed meeting everyone and

exchanging experiences of BPES. I feel I have found a group which

would have been useful to my family and I when I was a child. I

hope to continue to meet up and it will be support for my own

children if this happens in the future. Thank you to everyone for

meeting up and I hope to stay longer next time. Happy Christmas to

everyone and all the best for 2006. Take care, D

> Hi

> I would like to invite everyone to attend a get-together in

London, UK.

>

> Date: Sunday 18th December 2005

> Time: 11 am (but no problem if you are late, as it is a drop-in

coffee

> morning)

> Venue: The Thistle Hotel, Train Station

>

> We held one of these in the summer. Five families came along, with

parents

> and siblings. I think there were 15 of us in total.

> I do hope you can join us for an hour or so.

>

> This date has been selected because it coincides with Ern,

, Chloe

> and Naomi visiting London to see Mr Collin. They live in Singapore

so I

> thought it would be nice to plan a get-together around their short

trip to

> London.

>

> Please let me know if you would like to come. No need to make a

decision

> just now.

>

> Regards

> Shireen

>

>

> ---------------------------------

> Messenger NEW - crystal clear PC to PC calling worldwide

with voicemail

>

>

[Guest guest]

Hi All Garry and I agree completely, it was so worth travelling for. It is so nice to meet people face to face and chat about things that we all understand. I really don't know what I would do without this group, it has been a life saver and I really mean that. Thank you so much Shireen, you are a little angel for making all the arrangements and it all went so well. Take care all Lucy xxxxxClare Teale <clareteale@...> wrote: Hi all, hope all preps for christmas are going well. Just a note to say thank you to Shireen for arranging another successfull get together in London on Sunday. It was fabulous to see everyone, and Emy and I had an excellent time, we have enjoyed meeting

others, sharing stories and enjoying ourselves. We also took time to go for lunch and to shop. We even stopped until dark so we could see the lights in Oxford Circus. What a special day. I think this is a fantastic way forward for us as adults and our children, to give and recieve support that maybe we didnt get as children, there is no better feeling. Thank you to all of you and Shireen for continuing support through this network. Happy christmas to all and wishing everyone succes for 2006. Love and tinsle clare and emy - Hertfordshire, UKLucy Chidgey <lcgosport@...> wrote: Hi Shireen Just a quick note to say that myself, Garry and little

Holly will definitely be there, wouldn't miss another meeting for the world!! Looking forward to it. Note to Clare and Emy - I will bring copies of the photos we took last time for you to take home with you. I have some really nice ones. See you soon Lucy xxAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote: HiI would like to invite everyone to attend a get-together in London, UK.Date: Sunday 18th December 2005Time: 11 am (but no problem if you are late, as it is a drop-in coffeemorning)Venue: The Thistle Hotel, Train Station We held one of these in the summer. Five families came along, with parentsand siblings. I think there were 15 of us in total.I do hope you can join us

for an hour or so.This date has been selected because it coincides with Ern, , Chloeand Naomi visiting London to see Mr Collin. They live in Singapore so Ithought it would be nice to plan a get-together around their short trip toLondon.Please let me know if you would like to come. No need to make a decisionjust now.RegardsShireen Messenger NEW - crystal clear PC to PC calling worldwide with voicemail __________________________________________________

[Guest guest]

Hello all,

You may not all know me. I am the mother of Danny, who has

BPES, and we live in Portugal in the city of Porto.

Who went to the previous meeting in London knows us. A

special hello to you, and I tell you, we would like to have gone

again.

Anyway, I would like to share with you all what came ou of the

appointment Danny had with Mr Collin last November.

For who does not know us, Danny is 6 years old and he is the

first one in our family with this condition, and so far he has not had

any surgical intervention. Fortunatelly, he was rightly

diagnosed very soon after he was born. His vision is evaluated

very six months and so far he shows no problems and he does not need

glasses. He is aware of his condition, and he does not like when

people make comments, but he has two big brothers and lots of friends

who love him the way he is. So far he has a very tough character, very

confident and very outgoing.

In Portugal we were not able to find a surgeon who specialises in

BPES correction, so when I went looking on the internet I found this

extraordinary site which has been a great support. Thank you to you

all.

Well, back to the outcome of the appointment:

It went very well. I did have the feeling that Mr Collin

not only has a lot of experience in this condition but he also takes

into consideration the effect that any intervention might have in the

quality of life of the child. Apparently does not seem to let

this condition affect him psychologically, so Mr. Collin suggested for

now, bu not with any urgency, to lift the eyelids, and leave the

corner of the eye for after puberty, when the nasal bridge is fully

developed. I am very pleased I went to see him, and we have

booked the operation for early August.

A very Happy Christmas to you all and an even Happier 2006.

Take care,

and from Portugal

Hi All

Garry and I agree completely, it was so

worth travelling for. It is so nice to meet people face to face

and chat about things that we all understand. I really don't

know what I would do without this group, it has been a life saver and

I really mean that. Thank you so much Shireen, you are a

little angel for making all the arrangements and it all went so

well.

Take care all

Lucy xxxxx

Clare Teale <clareteale@...> wrote:

Hi all, hope all preps for christmas are going

well.

Just a note to say thank you to Shireen for arranging

another successfull get together in London on Sunday.

It was fabulous to see everyone, and Emy and I had an

excellent time, we have enjoyed meeting others, sharing stories and

enjoying ourselves.

We also took time to go for lunch and to shop. We

even stopped until dark so we could see the lights in Oxford Circus.

What a special day.

I think this is a fantastic way forward for us as adults

and our children, to give and recieve support that maybe we didnt

get as children, there is no better feeling.

Thank you to all of you and Shireen for continuing support

through this network.

Happy christmas to all and wishing everyone succes for

2006.

Love and tinsle

clare and emy - Hertfordshire, UK

--

da Conceição Hogg

Escola Superior de Biotecnologia

Universidade Católica Portuguesa

Rua Dr. António Bernardino de Almeida

4200-072 Porto

Portugal

Tel: 22 5580053

Fax: 22 5090351

[Guest guest]

Hi , and family... Excellent news. We missed you last week at the meet...maybe another time? Happy christmas and a magical 2006. Clare and Emy , Hertfordshire - UK Conceição Hogg <chogg@...> wrote: Hello all, You may not all know me. I am the mother of Danny, who has BPES, and we live in Portugal in the city of Porto. Who went to the previous meeting in London knows us. A special hello to you, and I tell you, we would like to have gone again. Anyway, I would like to share with you all

what came ou of the appointment Danny had with Mr Collin last November. For who does not know us, Danny is 6 years old and he is the first one in our family with this condition, and so far he has not had any surgical intervention. Fortunatelly, he was rightly diagnosed very soon after he was born. His vision is evaluated very six months and so far he shows no problems and he does not need glasses. He is aware of his condition, and he does not like when people make comments, but he has two big brothers and lots of friends who love him the way he is. So far he has a very tough character, very confident and very outgoing. In Portugal we were not able to find a surgeon who specialises in BPES correction, so when I went looking on the internet I found this extraordinary site which has been a great support. Thank you to you all. Well, back to the outcome of the appointment: It went very well. I did have the feeling that Mr Collin not only has a lot of experience in this condition but he also takes into consideration the effect that any intervention might have in the quality of life of the child. Apparently does not seem to let this condition affect him psychologically, so Mr. Collin suggested for now, bu not with any urgency, to lift the eyelids, and leave the corner of the eye for after puberty, when the nasal bridge is fully developed. I am very pleased I went to see him, and we have booked the operation for early August. A very Happy Christmas to you all and an even Happier 2006. Take care, and from Portugal Hi All Garry and I agree

completely, it was so worth travelling for. It is so nice to meet people face to face and chat about things that we all understand. I really don't know what I would do without this group, it has been a life saver and I really mean that. Thank you so much Shireen, you are a little angel for making all the arrangements and it all went so well. Take care all Lucy xxxxxClare Teale <clareteale@...> wrote: Hi all, hope all preps for christmas are going well. Just a note to say thank you to Shireen for arranging another successfull get together in London on Sunday. It was fabulous to see everyone, and Emy and I had an excellent time, we

have enjoyed meeting others, sharing stories and enjoying ourselves. We also took time to go for lunch and to shop. We even stopped until dark so we could see the lights in Oxford Circus. What a special day. I think this is a fantastic way forward for us as adults and our children, to give and recieve support that maybe we didnt get as children, there is no better feeling. Thank you to all of you and Shireen for continuing support through this network. Happy christmas to all and wishing everyone succes for 2006. Love and tinsle clare and emy - Hertfordshire, UK -- da Conceição HoggEscola Superior de BiotecnologiaUniversidade

Católica PortuguesaRua Dr. António Bernardino de Almeida4200-072 PortoPortugalTel: 22 5580053Fax: 22 5090351

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