Re: Ireland anyone?

[Guest guest]

Hi My name is Lucy. My husband Garry and I have a daughter called Holly who is the first in the family to have BPES. We live in Hampshire,UK but thought I would reply to you to give you some support. Holly is now 21 months old but was first diagnosed about 5 months old (There are photos of her posted on the Bleph website). By the time we were referred to the specialist in London after going through the board etc and being seen by our local hospital Holly was 10 months old when seen. She was then put on the list for her first operation (eye lift) which came through for May this year. Unfortunately Holly was poorly so it was moved to September, which did go ahead. It was the best thing we did for Holly because she is like a different child with more confidence seeing a lot more. There is no-one near me either with this condition so I found this support group

really great to ask questions etc. I also found the get togethers great which are normally held every summer in London. People generally travel from all over to attend. You are very welcome to give me a call if you would prefer to chat over the phone, just let me know and I can e-mail my phone number. Take care and please never feel like you are on your own!! Lucy xx ( Gosport, Hampshire UK)hplisaobr <hplisaobr@...> wrote: Hi Everyone, from Ireland here again. Sorry to ask the same question again, but I didn't get any response from my last message. Our 5 month old daughter has just seen the geneticist last week and he said she has BPES, so we are wondering if there is anyone we can chat to that knows about BPES here in Ireland, as it's not a condition that there is much information really available on, and we'd really love to hear from parents in Ireland if possible.If not... I'm so grateful to you all out there for sharing your stories and photos. If anyone out there has a daughter that was seen at around 5 months, who then was refered to an eye surgeon for Ptosis surgery, I'd really appreciate any help/information/photos/suggestions!!! As I am very nervous about my little angel going for surgery.Thanks again. County Kildare,

Ireland Send instant messages to your online friends http://uk.messenger.

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Hey Lucy,

Thank you so much for your email, it was so kind of you to take the time to reply to my email, with all the information about Holly. I seen her photo's too - she is such a little beauty! I have just created an album of 's photos so you can see how she's doing!

I am so aprehensive about the visit to the surgeon - whenever that is, as we are still waiting on the date for the 1st apointment, that the geneticist refered us to, as I am not sure how successful the operations are? or even if is a suitable candidate... So I suppose the only thing to do is be patient and wait to see what the surgeon herself says when she sees .

I was facinated by your earlier mail about initally Holly had temporary sling surgery - but when she is older she will need more op's to make the changes permanent... Is that because of her age, or is that just part of the procedure??

I'd absolutely be on for meeting up whenever the next get-together is, I think the best support and information we can get is from people that are living through this each day with their kids, rather than some big shot doctor spouting genetic terms at us!! Did you find yourself disbelieving about Holly at first?? The reason I ask Lucy, is that to all intents and purposes seems fine! Apart from her eyes there is nothing wrong with her, she's not ill, or different really, so when someone tells me that she has a 'Rare Genetic Disorder or Syndrome' I was really taken aback... were you too?? Also lots of friends and family love to tell me how 'Sorry they are' about , which I really don't get! I know they are trying to be kind, and they probably don't know what else to be saying!!! But it sort of doesn't sit right with me, if this is making any sense, as she's

fine!

Sorry for all that, but it's so amazing to have someone to talk to that has gone through this journey with their own daughter! Thank you again Lucy for getting in touch, it's a great relief to know that there is someone out there, that knows whats going on!

I'd absolutely love your number if you don't mind! Mine is (from the UK) 0035316290781 or Mobile - which I always have with me ;0) is 00353876056764.

Thanks again Lucy, look forward to talking to you soon!

x

Re: blepharophimosis Ireland anyone?

Hi

My name is Lucy. My husband Garry and I have a daughter called Holly who is the first in the family to have BPES. We live in Hampshire,UK but thought I would reply to you to give you some support. Holly is now 21 months old but was first diagnosed about 5 months old (There are photos of her posted on the Bleph website). By the time we were referred to the specialist in London after going through the board etc and being seen by our local hospital Holly was 10 months old when seen. She was then put on the list for her first operation (eye lift) which came through for May this year. Unfortunately Holly was poorly so it was moved to September, which did go ahead. It was the best thing we did for Holly because she is like a different child with more confidence seeing a lot more.

There is no-one near me either with this condition so I found this support group really great to ask questions etc. I also found the get togethers great which are normally held every summer in London. People generally travel from all over to attend.

You are very welcome to give me a call if you would prefer to chat over the phone, just let me know and I can e-mail my phone number.

Take care and please never feel like you are on your own!!

Lucy xx ( Gosport, Hampshire UK)hplisaobr <hplisaobr (DOT) com> wrote:

Hi Everyone, from Ireland here again. Sorry to ask the same question again, but I didn't get any response from my last message. Our 5 month old daughter has just seen the geneticist last week and he said she has BPES, so we are wondering if there is anyone we can chat to that knows about BPES here in Ireland, as it's not a condition that there is much information really available on, and we'd really love to hear from parents in Ireland if possible.If not... I'm so grateful to you all out there for sharing your stories and photos. If anyone out there has a daughter that was seen at around 5 months, who then was refered to an eye surgeon for Ptosis surgery, I'd really appreciate any help/information/ photos/suggestio ns!!! As I am very nervous about my little angel going for surgery.Thanks again. County Kildare, Ireland

Send instant messages to your online friends http://uk.messenger .

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I have a 2 month old daughter named samantha who has Bleph she was diagnosed at the hospital the day after she was born we then took her to so a specialist i thought it would be best for her to have surgery as early as possible but the dr told us that we need to wait until she was at least 3 because her muscle in her face are not fully formed and he would have to redue the surgery when she got older he said the only way they would do the surgery now is if she started losing her eye sight which thank god she hasn't being that we don't want to put our daughter through any more surgery than necessary we opted to sit back and wait. My husband also has bleph and he surgeon took the same route with him and his eyes turned out great. So hopefully that is a sign that we are doing what is best for our baby. I hope all this has helped

(OHIO USA)

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Hi ,

Thanks so much for your reply! It's interesting that different doc's have different opinions on the surgery options - from what I can tell from what I have read so far, many people seem to be advised that getting surgery done early is adviseable, and others don't. I am trying to be patient waiting for our apointment to come for the surgeon will be going to see, and hopefully she can give us some options on what the best course of action is, and help us to understand what all the different options mean. I think my preference would be also to wait, as you are doing, if the surgery would have to be repeated later on, as I nearly got weak when they had to take blood samples from last week, so I can't imagine how tough having to bring her into hospital for surgery would be! But I suppose until we see the doc here in Ireland that we have been refered to

by the geneticist, we can't tell what will happen.

Lucy, if your reading this - or anyone else who has gone through the surgery, would you mind telling me, how long does the sling or other surgeries usually take - how long do they keep the baby in the hospital for? and were you allowed stay with the baby all the time??

I'd be really interested to hear from anyone else on the board on what options you were offered too, if anyone has a minute to reply please, as I am wondering is it more usual to be advised to wait, rather than have surgery that might have to be repeated. I'm guessing, that like with everything, it depends on each individual case... but any info/opinions etc are greatly appreciated!

Thanks again for taking the time to reply and share the information with me, it's a great help & so much appreciated!

Best regards,

Re: blepharophimosis Ireland anyone?

I have a 2 month old daughter named samantha who has Bleph she was diagnosed at the hospital the day after she was born we then took her to so a specialist i thought it would be best for her to have surgery as early as possible but the dr told us that we need to wait until she was at least 3 because her muscle in her face are not fully formed and he would have to redue the surgery when she got older he said the only way they would do the surgery now is if she started losing her eye sight which thank god she hasn't being that we don't want to put our daughter through any more surgery than necessary we opted to sit back and wait. My husband also has bleph and he surgeon took the same route with him and his eyes turned out great. So hopefully that is a sign that we are doing what is best for our baby. I hope all this has helped

(OHIO USA) ____________ _________ _________ _________ _________ _________ _________ ______Try Juno Platinum for Free! Then, only $9.95/month!Unlimited Internet Access with 1GB of Email Storage.Visit http://www.juno. com/value to sign up today!

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[Guest guest]

Hi ,

Nice to meet you, I've just been catching up with the site as I

seem to have been too busy to check it for ages! First thing -

congratulations on your gorgeous daughter ! My daughter Abbie

has BPES. As you rightly say, it's odd that people seem to feel

sorry for our misfortune having an " imperfect " baby isn't it.

Anyway, the word syndrome simply refers to a group of symptoms which

tend to occur together in a predictable pattern (not necessarily

including developmental delay) in this case the Bleph, Ptosis

(eyelid droop) and epicanthus inversus (inner-eye corner shape) are

the individual abnormalities that when found together make up the

syndrome. (if you read my other post you can see Abbie has some

other issues too but she is the exception rather than the rule I

think - usually kids with BPES have normal intelligence).

I'm glad you've been chatting to Lucy. Holly is even cuter in

person and into everything - I met her at the last get-together. i

really hope you can get to the next one, I think you will find it

really helpful and fun.

Good luck for 's surgical appointments. Yes the advice about

age to proceed with surgery is individual and based on whether the

condition is affecting the visual development. If not it is advised

to leave it until pre-school. See how you get on with them but I

found it helpful to check on my surgeons experience and got a second

opinion from Mr Collin at Moorfields as he has operated on most UK

BPES people.

I'd love to chat too if you like so if you reply I can text you my

number.

Good luck with everything,

Leah and Abbie

--- In blepharophimosis , lisa obrien <hplisaobr@...>

wrote:

>

> Hi ,

>

> Thanks so much for your reply! It's interesting that different

doc's have different opinions on the surgery options - from what I

can tell from what I have read so far, many people seem to be

advised that getting surgery done early is adviseable, and others

don't. I am trying to be patient waiting for our apointment to come

for the surgeon will be going to see, and hopefully she can

give us some options on what the best course of action is, and help

us to understand what all the different options mean. I think my

preference would be also to wait, as you are doing, if the surgery

would have to be repeated later on, as I nearly got weak when they

had to take blood samples from last week, so I can't imagine

how tough having to bring her into hospital for surgery would be!

But I suppose until we see the doc here in Ireland that we have been

refered to by the geneticist, we can't tell what will happen.

> Lucy, if your reading this - or anyone else who has gone through

the surgery, would you mind telling me, how long does the sling or

other surgeries usually take - how long do they keep the baby in the

hospital for? and were you allowed stay with the baby all the time??

> I'd be really interested to hear from anyone else on the board on

what options you were offered too, if anyone has a minute to reply

please, as I am wondering is it more usual to be advised to wait,

rather than have surgery that might have to be repeated. I'm

guessing, that like with everything, it depends on each individual

case... but any info/opinions etc are greatly appreciated!

>

> Thanks again for taking the time to reply and share the

information with me, it's a great help & so much appreciated!

>

> Best regards,

>

>

>

> Re: blepharophimosis Ireland anyone?

>

>

> I have a 2 month old daughter named samantha who has Bleph she was

diagnosed at the hospital the day after she was born we then took

her to so a specialist i thought it would be best for her to have

surgery as early as possible but the dr told us that we need to wait

until she was at least 3 because her muscle in her face are not

fully formed and he would have to redue the surgery when she got

older he said the only way they would do the surgery now is if she

started losing her eye sight which thank god she hasn't being that

we don't want to put our daughter through any more surgery than

necessary we opted to sit back and wait. My husband also has bleph

and he surgeon took the same route with him and his eyes turned out

great. So hopefully that is a sign that we are doing what is best

for our baby. I hope all this has helped

>

> (OHIO USA)

>

>

> ____________ _________ _________ _________ _________ _________

_________ ______

> Try Juno Platinum for Free! Then, only $9.95/month!

> Unlimited Internet Access with 1GB of Email Storage.

> Visit http://www.juno. com/value to sign up today!

>

>

>

> Send instant messages to your online friends

http://uk.messenger.

>

[Guest guest]

Hello ,

My name is , and I have a son () with BPES. He is 7

years old and he has not had any surgery yet, although we intend to do

it in the future. We live in Portugal but my husband

is English and his grandmother was Irish! By the way, I am

Portuguese.

For some reason, which I do not know, I did not receive your

first mail. I am so sorry that it took some time for you to have

a reply.

I have been in this group for some time (years), and I find it a

well of information and support. My family and I have been to

one of the meetings in London. We really did enjoy it.

I am replying to your mail, just to tell you our story.

was diagnosed, in Portugal, with BPES very soon after birth (1

month?) and he was going to operated when he was about 8 months old.

However he got fever and the operation was cancelled. After this

I started searching for more information about this condition and

was seen in Moorfields eye Hospital in London by Prof Tony

, who advised us to see Mr Collin, and we did. The

doctor in Portugal that checks his vision, and the two Doctors in

England told us that in his case there was no urgency for him to be

operated. So they told us to check his vision regularly, and

wait till we feel we are prepared for the surgery. And that is

what we( , Mummy and Daddy) are doing.

is a very happy boy , he has been going to school since he

was 2 years old, from 2 to five to one school and then he moved to

another school when he was 6.

He is very bright and popular among boys and girls, and he is

very confident as well! These are words that came from his

teacher's mouth, not mine. Well, I say that too.

I saw 's photos and she is lovely ! You are right ,

there is nothing wrong with her! She has small eyes, so what?

She is beautiful! And we are all different, thank God!

That is what I tell my sons ( I have three boys, only has

BPES).

Now, I will tell why we have not had operated yet.

1 - His vision, and his social life are not being affected

2 - The earlier he has the operation, the more operations he will

have to have.

3 - We do not feel, at the moment, that the quality of his

life will improve in such a way that it will be worthwhile for what he

( and us) will have to go through.

I hope that this can be of some help to you, and do not

worry to much about it, or about people's comments.

For my husband and I, we found that the best thing is being

informed ( by this group, and the doctors and surgeons) and do what we

feel comfortable with.

Go to see the surgeon, but prepare a list of questions, and make

sure he/she answers.

I hope I did not bore you with my long story, and please feel

freee to ask me anything else you would like to know about

Al the best for and you.

Love from

X--Newman-Property:

groups-email-ff

Content-Type: multipart/alternative;

boundary= " 0-262909000-1162381958=:82407 "

Hey Lucy,

Thank you so much for your email, it was

so kind of you to take the time to reply to my email, with all the

information about Holly. I seen her photo's too - she is such a

little beauty! I have just created an album

of 's photos so you can see how she's

doing!

I am so aprehensive about the visit to

the surgeon - whenever that is, as we are still waiting on the date

for the 1st apointment, that the geneticist refered us to, as I am not

sure how successful the operations are? or even if is a

suitable candidate... So I suppose the only thing to do is be patient

and wait to see what the surgeon herself says when she sees

.

I was facinated by your earlier mail

about initally Holly had temporary sling surgery - but when she is

older she will need more op's to make the changes permanent... Is that

because of her age, or is that just part of the

procedure??

I'd absolutely be on for meeting up

whenever the next get-together is, I think the best support and

information we can get is from people that are living through this

each day with their kids, rather than some big shot doctor spouting

genetic terms at us!! Did you find yourself disbelieving about

Holly at first?? The reason I ask Lucy, is that to all intents and

purposes seems fine! Apart from her eyes there is

nothing wrong with her, she's not ill, or different really, so when

someone tells me that she has a 'Rare Genetic Disorder or Syndrome' I

was really taken aback... were you too?? Also lots of friends

and family love to tell me how 'Sorry they are' about , which I

really don't get! I know they are trying to be kind, and they

probably don't know what else to be saying!!! But it sort of doesn't

sit right with me, if this is making any sense, as she's

fine!

Sorry for all that, but it's so amazing

to have someone to talk to that has gone through this journey with

their own daughter! Thank you again Lucy for getting in touch,

it's a great relief to know that there is someone out there, that

knows whats going on!

I'd absolutely love your number if you

don't mind! Mine is (from the UK) 0035316290781 or Mobile -

which I always have with me ;0) is 00353876056764.

Thanks again Lucy, look forward to

talking to you soon!

x

Re: blepharophimosis Ireland anyone?

Hi

My name is Lucy. My husband Garry

and I have a daughter called Holly who is the first in the family to

have BPES. We live in Hampshire,UK but thought I would reply to

you to give you some support. Holly is now 21 months old

but was first diagnosed about 5 months old (There are photos of her

posted on the Bleph website). By the time we were referred to

the specialist in London after going through the board etc and being

seen by our local hospital Holly was 10 months old when seen.

She was then put on the list for her first operation (eye lift) which

came through for May this year. Unfortunately Holly was poorly

so it was moved to September, which did go ahead. It was the

best thing we did for Holly because she is like a different child with

more confidence seeing a lot more.

There is no-one near me either with this

condition so I found this support group really great to ask questions

etc. I also found the get togethers great which are normally

held every summer in London. People generally travel from all

over to attend.

You are very welcome to give me a call if

you would prefer to chat over the phone, just let me know and I can

e-mail my phone number.

Take care and please never feel like you

are on your own!!

Lucy xx ( Gosport, Hampshire UK)

hplisaobr <hplisaobr (DOT) com> wrote:

Hi Everyone,

from Ireland here again. Sorry to ask the same question

again,

but I didn't get any response from my last message. Our 5 month

old

daughter has just seen the geneticist last week and he

said

she has BPES, so we are wondering if there is anyone we can chat

to

that knows about BPES here in Ireland, as it's not a condition

that

there is much information really available on, and we'd really

love

to hear from parents in Ireland if possible.

If not... I'm so grateful to you all out there for sharing your

stories and photos. If anyone out there has a daughter that was

seen at around 5 months, who then was refered to an eye surgeon

for

Ptosis surgery, I'd really appreciate any

help/information/ photos/suggestio ns!!! As I am very nervous about

my

little angel going for surgery.

Thanks again.

County Kildare, Ireland

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[Guest guest]

Hi , this is Clare and Emy from Hertfordshire, UK I love your e-mails, it reminds me of how i felt when i discovered this most amazing site, all of a sudden we realise that we are not alone, and there is a whole community out in the big wide world that feels the same way we do, and looks the same way we do - quite mind blowing!! I have BPES (37) my daughter has BPES (11), my husband and 2 sons dont. Emy had her operation at age 4, they took excess skin from across the nose, then six months later the second operation. They used muscle tissue from her leg and stitched a crease in her eyelid. This is exactly what happened to me over 25 years ago (age 14), the same proceedure the same surgeon, Mr Collin at Moorfields. I am the first person to have BPES in my family. They waited until my

daughter was 4 (nearly at school), but kept a check on her eyesight development - as far as i am aware if the eyesight is not good because of the lids, they will do a temporary lift at an early age. Depending on the child and degree of BPES depends on temporary or age of operation. She is now 11 and it feels like a world away, she deals with living with BPES every day, so do I. It doesnt bother us at all, we are no different to anyone else in the world, we simply have different eyes. The Teale's are happy confident well balanced people, and to be honest i think that this is more important that looking slightly different. I would love for you to mail me back,if you want to tell me more about your situation. Best wishes and lots of rainbows Clare Teale Herts, UK lisa obrien

<hplisaobr@...> wrote: Hi , Thanks so much for your reply! It's interesting that different doc's have different opinions on the surgery options - from what I can

tell from what I have read so far, many people seem to be advised that getting surgery done early is adviseable, and others don't. I am trying to be patient waiting for our apointment to come for the surgeon will be going to see, and hopefully she can give us some options on what the best course of action is, and help us to understand what all the different options mean. I think my preference would be also to wait, as you are doing, if the surgery would have to be repeated later on, as I nearly got weak when they had to take blood samples from last week, so I can't imagine how tough having to bring her into hospital for surgery would be! But I suppose until we see the doc here in Ireland that we have been refered to by the geneticist, we can't tell what will happen. Lucy, if your reading this - or anyone else who has gone through the

surgery, would you mind telling me, how long does the sling or other surgeries usually take - how long do they keep the baby in the hospital for? and were you allowed stay with the baby all the time?? I'd be really interested to hear from anyone else on the board on what options you were offered too, if anyone has a minute to reply please, as I am wondering is it more usual to be advised to wait, rather than have surgery that might have to be repeated. I'm guessing, that like with everything, it depends on each individual case... but any info/opinions etc are greatly appreciated! Thanks again for taking the time to reply and share the information with me, it's a great help & so much

appreciated! Best regards, Re: blepharophimosis Ireland anyone? I have a 2 month old daughter named samantha who has Bleph she was diagnosed at the hospital the day after she was born we then took her to so a

specialist i thought it would be best for her to have surgery as early as possible but the dr told us that we need to wait until she was at least 3 because her muscle in her face are not fully formed and he would have to redue the surgery when she got older he said the only way they would do the surgery now is if she started losing her eye sight which thank god she hasn't being that we don't want to put our daughter through any more surgery than necessary we opted to sit back and wait. My husband also has bleph and he surgeon took the same route with him and his eyes turned out great. So hopefully that is a sign that we are doing what is best for our baby. I hope all this has helped (OHIO USA) ____________ _________ _________ _________ _________ _________ _________ ______Try Juno Platinum for Free! Then, only $9.95/month!Unlimited Internet Access with 1GB of

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[Guest guest]

Hello ,

Thank you so much for your message!! I am so amazed at how wonderful the people on this site are, you are all so generous, for sharing your stories with me, and it is so much appreciated!!

Your comments regarding the surgery are great, and hopefully we will get an experienced surgeon that will discuss all options with us, and help us to make the right choices for . I don't believe that she needs to go through any surgeries at this stage, as she deffinitely doesn't have any sight issues that I can tell, as she is Very alert!!! and follows me all around the room, where ever I go! I do hope that whatever decisions we have to make, we have the right information, and an open minded doctor to allow us to do the very best we can for .

I do hope that we can get to the next meeting, as the support, help and advice so far, has been brilliant, so I'd love to meet everyone!

Thanks again , by the way... my son wanted to name , if she had of been a boy, as it is his favourite boys name!!! I am sure that he is absolutely georgeous too!!

xx

Re: blepharophimosis Ireland anyone?

Hi

My name is Lucy. My husband Garry and I have a daughter called Holly who is the first in the family to have BPES. We live in Hampshire,UK but thought I would reply to you to give you some support. Holly is now 21 months old but was first diagnosed about 5 months old (There are photos of her posted on the Bleph website). By the time we were referred to the specialist in London after going through the board etc and being seen by our local hospital Holly was 10 months old when seen. She was then put on the list for her first operation (eye lift) which came through for May this year. Unfortunately Holly was poorly so it was moved to September, which did go ahead. It was the best thing we did for Holly because she is like a different child with more confidence seeing a lot more.

There is no-one near me either with this condition so I found this support group really great to ask questions etc. I also found the get togethers great which are normally held every summer in London. People generally travel from all over to attend.

You are very welcome to give me a call if you would prefer to chat over the phone, just let me know and I can e-mail my phone number.

Take care and please never feel like you are on your own!!

Lucy xx ( Gosport, Hampshire UK)hplisaobr <hplisaobr (DOT) com> wrote:

Hi Everyone, from Ireland here again. Sorry to ask the same question again,but I didn't get any response from my last message. Our 5 month olddaughter has just seen the geneticist last week and he saidshe has BPES, so we are wondering if there is anyone we can chat tothat knows about BPES here in Ireland, as it's not a condition thatthere is much information really available on, and we'd really loveto hear from parents in Ireland if possible.If not... I'm so grateful to you all out there for sharing yourstories and photos. If anyone out there has a daughter that wasseen at around 5 months, who then was refered to an eye surgeon forPtosis surgery, I'd really appreciate anyhelp/information/ photos/suggestio ns!!! As I am very nervous about mylittle angel going for surgery.Thanks again.County Kildare, Ireland

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[Guest guest]

Hi Ya Clare,

Ahh thanks so much Clare, it's great to know that there are so many people out there, going through all the same things, with all the experience, and the kindness to share it with me and my family. We are truly amazed at all the lovely emails and advice we have received since joining the group, and hope that one day, through our experiences with , someone will possibly get some good information from us too!!

I adore your attitude, you are so right!! It is SOOOO much more important to be a happy family, getting on with everyday life, than being hung up on appearances, or peoples comments or perceptions. It's fantastic to hear your story, and gives me so much encouragement, so Thank You!! for taking the time to reply, it really is greatly appreciated Clare! I am thrilled to hear so many stories about Mr Collin, he really does seem to be the No 1 Doc out there! I am not sure what experience the surgeon will be seeing here in Ireland has, she has a private practice I believe, and the geneticist assured us she does have experience, but at least, we know who to go to see, if a second opinion is necessary!

I have a six year old son who doesn't have BPES and who is a total headcase!! He really is the funniest boy I have ever met, so he keeps us all laughing! He has the right attitude too, he doesn't see anything different about , and just adores her, and tells her every day how beautiful she is! So hopefully, she will grow up confident and for sure - well loved and adored, as she is our little princess!

Thanks again Clare, I am sure that when we do get our apointment to see the surgeon, I will be back on asking tons of questions and hoping I can make the right decisions for our little angel.

Look forward to talking to you again soon!

x

Re: blepharophimosis Ireland anyone?

I have a 2 month old daughter named samantha who has Bleph she was diagnosed at the hospital the day after she was born we then took her to so a specialist i thought it would be best for her to have surgery as early as possible but the dr told us that we need to wait until she was at least 3 because her muscle in her face are not fully formed and he would have to redue the surgery when she got older he said the only way they would do the surgery now is if she started losing her eye sight which thank god she hasn't being that we don't want to put our daughter through any more surgery than necessary we opted to sit back and wait. My husband also has bleph and he surgeon took the same route with him and his eyes turned out great. So hopefully that is a sign that we are doing what is best for our baby. I hope all this has helped

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[Guest guest]

Hello,

My name is Nicki Venable, Fort Wayne, Indiana. My daughter is almost

4 months and she had temporary sling surgery at 3 months. Her

pictures are in the photo section (Avery Venable). She went in on

October 12, 2006 at 1:45pm and was out of surgery at 2:45pm. She was

in recovery for approximately 45 minutes and we left the hospital at

4:15pm the very same day. The surgery was an out patient procedure.

Dr. Plager at Riley Childrens Hospital performed the surgery and was

fantastic. The pictures say a thousand words.....her eyes are wide

open and now looks as if she never had a condition in the first place.

Avery had no problems with her eye sight! Let me know if you want any

additional information.

Nicki Venable

--- In blepharophimosis , " hbarga@... " <hbarga@...>

wrote:

>

>

> I have a 2 month old daughter named samantha who has Bleph she was

diagnosed at the hospital the day after she was born we then took

her to so a specialist i thought it would be best for her to have

surgery as early as possible but the dr told us that we need to wait

until she was at least 3 because her muscle in her face are not

fully formed and he would have to redue the surgery when she got

older he said the only way they would do the surgery now is if she

started losing her eye sight which thank god she hasn't being that we

don't want to put our daughter through any more surgery than

necessary we opted to sit back and wait. My husband also has bleph

and he surgeon took the same route with him and his eyes turned out

great. So hopefully that is a sign that we are doing what is best for

our baby. I hope all this has helped

>

> (OHIO USA)

>

>

>

>

______________________________________________________________________

__

> Try Juno Platinum for Free! Then, only $9.95/month!

> Unlimited Internet Access with 1GB of Email Storage.

> Visit http://www.juno.com/value to sign up today!

>

[Guest guest]

> >

> >

> > I have a 2 month old daughter named samantha who has Bleph she

was

> diagnosed at the hospital the day after she was born we then took

> her to so a specialist i thought it would be best for her to have

> surgery as early as possible but the dr told us that we need to

wait

> until she was at least 3 because her muscle in her face are not

> fully formed and he would have to redue the surgery when she got

> older he said the only way they would do the surgery now is if she

> started losing her eye sight which thank god she hasn't being that

we

> don't want to put our daughter through any more surgery than

> necessary we opted to sit back and wait. My husband also has bleph

> and he surgeon took the same route with him and his eyes turned out

> great. So hopefully that is a sign that we are doing what is best

for

> our baby. I hope all this has helped

> >

> > (OHIO USA)

> >

> >

> >

> >

>

______________________________________________________________________

> __

> > Try Juno Platinum for Free! Then, only $9.95/month!

> > Unlimited Internet Access with 1GB of Email Storage.

> > Visit http://www.juno.com/value to sign up today!

> >

>Hi Nicki,

I looked at all of Avery's photos...she is gorgeous and those blue

eyes! I have sling surgery in Dec and was a bit nervous (I'm 36),

but your Avery is my inspiration. Thank you, (ekittycat) a Glass

[Guest guest]

Hi ,

Hope your family Christening went well. Anyway, I'm really glad I

could help I'd be lying if I said I don't ever feel uncertain

for Abbie or upset that this has happened to us, none of us can help

that, but I when I look at her now i don't notice the bleph, I just

see my perfect girl. Like you say, is just fine, I saw her

photos and she's gorgeous, you must be really proud of her! I

agree, it must just be some people's way of trying to be nice and

they'll get over it before long. I'd love to hear how it went as I

find those kind of situations a bit trying myself.

Are you still waiting for an appointment for the eye surgeons?

Abbie's first op is booked for the 8th of Jan. They said it's day

surgery although we may have to stay in London overnight for a check-

up the next morning. Let me know how gets on when she goes

for her appointments - I'd love to hear.

You don't sound cynical and I think you are just right about some

doctors but think of it this way too. Perhaps they also do it

because must be pretty daunting for our doctors - faced with such a

rare condition and having to know what they are talking about when

they may have never even heard of BPES let alone seen it before.

What makes it even worse for them is that parents of kids with rare

conditions very soon become experts about it so they also have to

contend with the patient (or parent) knowing more about the

condition than they do!

Anyway, lovely to hear from you and as usual, sorry for my delayed

reply, I'm quite shocking at checking my mail! Hope to talk to you

soon. Take care 'til then,

Love Leah and Abbie

> >

> > Hi ,

> >

> > Thanks so much for your reply! It's interesting that different

> doc's have different opinions on the surgery options - from what I

> can tell from what I have read so far, many people seem to be

> advised that getting surgery done early is adviseable, and others

> don't. I am trying to be patient waiting for our apointment to

come

> for the surgeon will be going to see, and hopefully she

can

> give us some options on what the best course of action is, and

help

> us to understand what all the different options mean. I think my

> preference would be also to wait, as you are doing, if the surgery

> would have to be repeated later on, as I nearly got weak when they

> had to take blood samples from last week, so I can't

imagine

> how tough having to bring her into hospital for surgery would be!

> But I suppose until we see the doc here in Ireland that we have

been

> refered to by the geneticist, we can't tell what will happen.

> > Lucy, if your reading this - or anyone else who has gone through

> the surgery, would you mind telling me, how long does the sling or

> other surgeries usually take - how long do they keep the baby in

the

> hospital for? and were you allowed stay with the baby all the

time??

> > I'd be really interested to hear from anyone else on the board

on

> what options you were offered too, if anyone has a minute to reply

> please, as I am wondering is it more usual to be advised to wait,

> rather than have surgery that might have to be repeated. I'm

> guessing, that like with everything, it depends on each individual

> case... but any info/opinions etc are greatly appreciated!

> >

> > Thanks again for taking the time to reply and share the

> information with me, it's a great help & so much appreciated!

> >

> > Best regards,

> >

> >

> >

> > Re: blepharophimosis Ireland anyone?

> >

> >

> > I have a 2 month old daughter named samantha who has Bleph she

was

> diagnosed at the hospital the day after she was born we then took

> her to so a specialist i thought it would be best for her to have

> surgery as early as possible but the dr told us that we need to

wait

> until she was at least 3 because her muscle in her face are not

> fully formed and he would have to redue the surgery when she got

> older he said the only way they would do the surgery now is if she

> started losing her eye sight which thank god she hasn't being that

> we don't want to put our daughter through any more surgery than

> necessary we opted to sit back and wait. My husband also has bleph

> and he surgeon took the same route with him and his eyes turned

out

> great. So hopefully that is a sign that we are doing what is best

> for our baby. I hope all this has helped

> >

> > (OHIO USA)

> >

> >

> > ____________ _________ _________ _________ _________ _________

> _________ ______

> > Try Juno Platinum for Free! Then, only $9.95/month!

> > Unlimited Internet Access with 1GB of Email Storage.

> > Visit http://www.juno. com/value to sign up today!

> >

> >

> >

> > Send instant messages to your online friends

> http://uk.messenger .

> >

>

>

>

>

> Send instant messages to your online friends

http://uk.messenger.

>

[Guest guest]

Hi ,

I'm glad the christening went so well. I hope your cousin's baby,

Holly, is fine now. I am always explaining Abbie's condition to

people because everyone seems to have to say " Oh isn't she tired " ,

which I think we all get when our kids are babies! Like Clare said,

well done for your positive reactions to others comments and

questions. You are blessing your kids with the encouragement to

grow into confident, happy people.

Thanks for asking about Abbie's op and keeping us in your thoughts

that day. It's coming up fast. I'll certainly let you know how it

goes. I am getting more and more nervous by the day. Not because

i'm worried about the decision because I know she needs it, but

because she's my baby (I'm sure anyone with kids knows what i mean

about that). Did you read Patsy's post about choosing not to have

surgery. I completely agree with what she has to say - Thanks

Patsy! Unfortunately Abbie's vision is affected so the surgeons say

she must have it but I think she's beautiful and I think I would

leave it and allow her to choose when older if I could. When she

was little I thought she should have it before school for cosmetic

reasons but now I've had more time to adjust I've realised thats not

necessarily what means young kids get a good time at school and it's

this thing about giving them the attitude to cope. Let me know how

you get on with 's future appointments won't you. If the

vision isn't a problem the surgeon won't do it 'til is older

anyway. If it helps one of the kids who came to the last london

meeting (Todd), who I think is four or five now, hasn't had surgery

cause his Mum and Dad decided to wait and he's getting on great!

Anyway better go as I've got a real busy week (as normal) but be

sure to keep in touch and let me know how you, and are

getting on. Take care,

Leah x x

> > >

> > > Hi ,

> > >

> > > Thanks so much for your reply! It's interesting that different

> > doc's have different opinions on the surgery options - from what

I

> > can tell from what I have read so far, many people seem to be

> > advised that getting surgery done early is adviseable, and

others

> > don't. I am trying to be patient waiting for our apointment to

> come

> > for the surgeon will be going to see, and hopefully she

> can

> > give us some options on what the best course of action is, and

> help

> > us to understand what all the different options mean. I think my

> > preference would be also to wait, as you are doing, if the

surgery

> > would have to be repeated later on, as I nearly got weak when

they

> > had to take blood samples from last week, so I can't

> imagine

> > how tough having to bring her into hospital for surgery would

be!

> > But I suppose until we see the doc here in Ireland that we have

> been

> > refered to by the geneticist, we can't tell what will happen.

> > > Lucy, if your reading this - or anyone else who has gone

through

> > the surgery, would you mind telling me, how long does the sling

or

> > other surgeries usually take - how long do they keep the baby in

> the

> > hospital for? and were you allowed stay with the baby all the

> time??

> > > I'd be really interested to hear from anyone else on the board

> on

> > what options you were offered too, if anyone has a minute to

reply

> > please, as I am wondering is it more usual to be advised to

wait,

> > rather than have surgery that might have to be repeated. I'm

> > guessing, that like with everything, it depends on each

individual

> > case... but any info/opinions etc are greatly appreciated!

> > >

> > > Thanks again for taking the time to reply and share

the

> > information with me, it's a great help & so much appreciated!

> > >

> > > Best regards,

> > >

> > >

> > >

> > > Re: blepharophimosis Ireland anyone?

> > >

> > >

> > > I have a 2 month old daughter named samantha who has Bleph she

> was

> > diagnosed at the hospital the day after she was born we then

took

> > her to so a specialist i thought it would be best for her to

have

> > surgery as early as possible but the dr told us that we need to

> wait

> > until she was at least 3 because her muscle in her face are not

> > fully formed and he would have to redue the surgery when she got

> > older he said the only way they would do the surgery now is if

she

> > started losing her eye sight which thank god she hasn't being

that

> > we don't want to put our daughter through any more surgery than

> > necessary we opted to sit back and wait. My husband also has

bleph

> > and he surgeon took the same route with him and his eyes turned

> out

> > great. So hopefully that is a sign that we are doing what is

best

> > for our baby. I hope all this has helped

> > >

> > > (OHIO USA)

> > >

> > >

> > > ____________ _________ _________ _________ _________ _________

> > _________ ______

> > > Try Juno Platinum for Free! Then, only $9.95/month!

> > > Unlimited Internet Access with 1GB of Email Storage.

> > > Visit http://www.juno. com/value to sign up today!

> > >

> > >

> > >

> > > Send instant messages to your online friends

> > http://uk.messenger .

> > >

> >

> >

> >

> >

> > Send instant messages to your online friends

> http://uk.messenger .

> >

>

>

>

>

>

>

>

>

> Send instant messages to your online friends

http://uk.messenger.

>

>

>

>

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