RE: Forgive me, I'm new to all this

[Guest guest]

Welcome Richie,

No worries, your email didn't put me (and I doubt anyone else) to

sleep! Thanks for sharing and please know that I could relate to a

lot of your message. I too have BPES and passed it along to my

daughter who was born in December 2003 - very close to your son's

age, and it makes me so happy when others think she is beautiful

just like I do!

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

wrote:

>

> Hello

>

> My name is Richie, and I was overwhlemed to find this support

group!!

>

> This explains why I am about to write this saga. So I apologise to

> all who read it, and understand those who close it after a couple

of

> lines, but I just need to get a couple of things off my chest

before

> I start talking to you all.

>

> I'm 36 and up to the age of 22 I had never even seen anyone else

> with Blepharophimosis (forgive me if I get any spelling wrong)

> unless they were my sister, my dad or 2 of my aunties on my dad's

> side.

>

> Even at that time I never even new the name for what we had. No

one

> on my dad's side ever wanted to talk about this, and this seemed

> normal until I started moving around the country. People would ask

> me what was up with my eyes, and I would tell them that I was

short

> sighted and that's why I wore glasses!!!!! But I knew what they

> really meant.

>

> I found out what it was called at age 29, and looked into it a

> little but there didnt seem to be much out there at the time.

>

> I work in a major Hospital in Liverpool, and have actully married

> the Office Manager from the Ophthalmology Dept. She says it was so

I

> could find out more information, easier. I keep telling her it was

> for the money!

>

> We had a little boy, ph in November of 2003, and even though

we

> knew it was 50/50 whether or not he would have this, we went ahead

> and did it. Of course he has it, but when I used to watch just

after

> he was born, all I used to see was the most beautiful little thing

> that I had ever seen and could not believe that I had a part in

> bringing him into this world!

>

> He is now 2 and a halfish and even now, when I see people that I

> have not seen in a while and show them pictures of him, (yes I am

a

> typical baby bore), I am still confused how they can say that he

is

> a cutie or he's lovely, followed by the statement that he is the

> spitting image of me! Honestly, I am not looking for sympathy, I

am

> just remembering my childhood and how strangers and even people I

> knew would treat me and my sister because of the way we looked.

>

> I even get some of the same feelings of dread that I had as a

child,

> when I see people staring at him when we are out n about. I am

> frightened that he will go thru what I went thru and this upsets

me.

>

> Knowing this, I myself had an operation last year were a piece of

> ligament was removed from my leg and used to suspend the upper

> eyelid on each side. I felt the benefits pretty much straight

away,

> as I noticed that my head was not held back as much.

>

> When my wife and I talk about having corrective surgery for

ph,

> we are scared, with the usual thoughts that I am sure you all have

> had. But seeing some of the pics that hve been posted it adds to

our

> combined strength and conviction that this is the correct thing to

> do.

>

> I will finish now, and hope that I have not bored you all to sleep.

>

> I would welcome any msgs back and will check for these tomorrow.

>

> Take care

>

> Richie

>

[Guest guest]

Hi Richie

This group is great for info on BPES, I am sure any of your worries or

questions many others will share or be able to answer.

I have the condition and hated the comments I got when I was a child, my mum

tells me children used to come up into my face and ask if I was blind and

instead of getting upset or answering I just used to punch them, luckily I

have grown out of that!!!

Good luck with finding out all you need to know.

Bryony

blepharophimosis Forgive me, I'm new to all this

Hello

My name is Richie, and I was overwhlemed to find this support group!!

This explains why I am about to write this saga. So I apologise to

all who read it, and understand those who close it after a couple of

lines, but I just need to get a couple of things off my chest before

I start talking to you all.

I'm 36 and up to the age of 22 I had never even seen anyone else

with Blepharophimosis (forgive me if I get any spelling wrong)

unless they were my sister, my dad or 2 of my aunties on my dad's

side.

Even at that time I never even new the name for what we had. No one

on my dad's side ever wanted to talk about this, and this seemed

normal until I started moving around the country. People would ask

me what was up with my eyes, and I would tell them that I was short

sighted and that's why I wore glasses!!!!! But I knew what they

really meant.

I found out what it was called at age 29, and looked into it a

little but there didnt seem to be much out there at the time.

I work in a major Hospital in Liverpool, and have actully married

the Office Manager from the Ophthalmology Dept. She says it was so I

could find out more information, easier. I keep telling her it was

for the money!

We had a little boy, ph in November of 2003, and even though we

knew it was 50/50 whether or not he would have this, we went ahead

and did it. Of course he has it, but when I used to watch just after

he was born, all I used to see was the most beautiful little thing

that I had ever seen and could not believe that I had a part in

bringing him into this world!

He is now 2 and a halfish and even now, when I see people that I

have not seen in a while and show them pictures of him, (yes I am a

typical baby bore), I am still confused how they can say that he is

a cutie or he's lovely, followed by the statement that he is the

spitting image of me! Honestly, I am not looking for sympathy, I am

just remembering my childhood and how strangers and even people I

knew would treat me and my sister because of the way we looked.

I even get some of the same feelings of dread that I had as a child,

when I see people staring at him when we are out n about. I am

frightened that he will go thru what I went thru and this upsets me.

Knowing this, I myself had an operation last year were a piece of

ligament was removed from my leg and used to suspend the upper

eyelid on each side. I felt the benefits pretty much straight away,

as I noticed that my head was not held back as much.

When my wife and I talk about having corrective surgery for ph,

we are scared, with the usual thoughts that I am sure you all have

had. But seeing some of the pics that hve been posted it adds to our

combined strength and conviction that this is the correct thing to

do.

I will finish now, and hope that I have not bored you all to sleep.

I would welcome any msgs back and will check for these tomorrow.

Take care

Richie

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.394 / Virus Database: 268.9.7/379 - Release Date: 29/06/2006

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.394 / Virus Database: 268.9.7/379 - Release Date: 29/06/2006

[Guest guest]

Hi Richie! You have definately come to the right place. Welcome to this wonderful group of amazing people and supporters.Your story was beautiful and heartfelt. Thank you for sharing it.I just recently joined this "family" because I had many anxieties and concerns about BPES. My 12 year old daughter has experienced some of the same ridicule you have, and the pain was killing me. She is the only person we have ever known to have this condition, so it is reassuring to know that we are not alone. Through this group, I have gained insight, knowledge, support, confidence, and most importantly, friends. Now, you will too.Like you, my daughter always felf that she was the only person in the world with this syndrome. I recently told her that there is a whole on-line support group for people with this condition. That in itself made her feel better, because it proved that she is not alone. I

haven't let her on this site yet, but I have shared a few stories and photos with her.I am interested in hearing about your first surgery as an adult, and how it has changed both your appearance and vision. Do you wish you had done it sooner?Again, welcome aboard the Blepharofamily!rnr_kelly <rnr_kelly@...> wrote: Hello My name is Richie, and I was overwhlemed to find this support group!! This explains why I am about to write this saga. So I apologise to all who read it, and understand those who

close it after a couple of lines, but I just need to get a couple of things off my chest before I start talking to you all. I'm 36 and up to the age of 22 I had never even seen anyone else with Blepharophimosis (forgive me if I get any spelling wrong) unless they were my sister, my dad or 2 of my aunties on my dad's side. Even at that time I never even new the name for what we had. No one on my dad's side ever wanted to talk about this, and this seemed normal until I started moving around the country. People would ask me what was up with my eyes, and I would tell them that I was short sighted and that's why I wore glasses!!!!! But I knew what they really meant. I found out what it was called at age 29, and looked into it a little but there didnt seem to be much out there at the time. I work in a major Hospital in Liverpool, and have actully married the Office Manager from the

Ophthalmology Dept. She says it was so I could find out more information, easier. I keep telling her it was for the money! We had a little boy, ph in November of 2003, and even though we knew it was 50/50 whether or not he would have this, we went ahead and did it. Of course he has it, but when I used to watch just after he was born, all I used to see was the most beautiful little thing that I had ever seen and could not believe that I had a part in bringing him into this world! He is now 2 and a halfish and even now, when I see people that I have not seen in a while and show them pictures of him, (yes I am a typical baby bore), I am still confused how they can say that he is a cutie or he's lovely, followed by the statement that he is the spitting image of me! Honestly, I am not looking for sympathy, I am just remembering my childhood and how strangers and even people I knew would treat

me and my sister because of the way we looked. I even get some of the same feelings of dread that I had as a child, when I see people staring at him when we are out n about. I am frightened that he will go thru what I went thru and this upsets me. Knowing this, I myself had an operation last year were a piece of ligament was removed from my leg and used to suspend the upper eyelid on each side. I felt the benefits pretty much straight away, as I noticed that my head was not held back as much. When my wife and I talk about having corrective surgery for ph, we are scared, with the usual thoughts that I am sure you all have had. But seeing some of the pics that hve been posted it adds to our combined strength and conviction that this is the correct thing to do. I will finish now, and hope that I have not bored you all to sleep. I would welcome any msgs back and will check for these

tomorrow. Take care Richie

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hi there, my son lynden is 8 years old and he is the first in our family to have BPES too, the best advice that I or anyone can give you is to talk to your doctor, then get a second opinion if you are unsure, a third opinion if you are still unsure.... my son was 5 weeks old when he had his 1st surgery, that was due to how severe his BPES was. ususally the doctors decide when to do surgery based on how the childs vision is affected, if right now your sons vision is unaffected by the "droop" then they usually opt to wait, where in my case lynden could not see enough to wait for if he had his vision would have been severely affected.

the other factors are that it depends on where you live and who does the surgery.

we were very fortunate (we live in canada) we have a doctor right in our city that specializes in BPES surgeries.

i hope that answers some of your questions..... second opinions are the key

Tonikka and Chris

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of Lise & SørenSent: June 30, 2006 9:15 AMblepharophimosis Subject: SV: blepharophimosis Forgive me, I'm new to all this

Hello,

I`ll start by saying that my english is not very good. I come from Denmark and this is the only site where I think I can get som help or support. I have a son with BPES and he is just 3 month old. He is the only one in our family and there is no history in any of our families with BPES. In the beginning I was very sad, but know I think he is the most beautifull baby-boy. But I cant find anybody In Denmark with this same disease. And the doctors have almost as many questions as we do. Is it true that we have to wait with the surgery intill he is about 3 years? I hope in time I can help some of you with your questions, but now I`m still at bit confused. Bye bye for now, I will for sure return later.

Fra: blepharophimosis [mailto:blepharophimosis ] På vegne af donna haskinsSendt: 30. juni 2006 14:13Til: blepharophimosis Emne: Re: blepharophimosis Forgive me, I'm new to all this

Hi Richie! You have definately come to the right place. Welcome to this wonderful group of amazing people and supporters.Your story was beautiful and heartfelt. Thank you for sharing it. I just recently joined this "family" because I had many anxieties and concerns about BPES. My 12 year old daughter has experienced some of the same ridicule you have, and the pain was killing me. She is the only person we have ever known to have this condition, so it is reassuring to know that we are not alone. Through this group, I have gained insight, knowledge, support, confidence, and most importantly, friends. Now, you will too.Like you, my daughter always felf that she was the only person in the world with this syndrome. I recently told her that there is a whole on-line support group for people with this condition. That in itself made her feel better, because it proved that she is not alone. I haven't let her on this site yet, but I have shared a few stories and photos with her.I am interested in hearing about your first surgery as an adult, and how it has changed both your appearance and vision. Do you wish you had done it sooner?Again, welcome aboard the Blepharofamily!rnr_kelly <rnr_kelly@...> wrote:

HelloMy name is Richie, and I was overwhlemed to find this support group!!This explains why I am about to write this saga. So I apologise to all who read it, and understand those who close it after a couple of lines, but I just need to get a couple of things off my chest before I start talking to you all.I'm 36 and up to the age of 22 I had never even seen anyone else with Blepharophimosis (forgive me if I get any spelling wrong) unless they were my sister, my dad or 2 of my aunties on my dad's side.Even at that time I never even new the name for what we had. No one on my dad's side ever wanted to talk about this, and this seemed normal until I started moving around the country. People would ask me what was up with my eyes, and I would tell them that I was short sighted and that's why I wore glasses!!!!! But I knew what they really meant.I found out what it was called at age 29, and looked into it a little but there didnt seem to be much out there at the time. I work in a major Hospital in Liverpool, and have actully married the Office Manager from the Ophthalmology Dept. She says it was so I could find out more information, easier. I keep telling her it was for the money!We had a little boy, ph in November of 2003, and even though we knew it was 50/50 whether or not he would have this, we went ahead and did it. Of course he has it, but when I used to watch just after he was born, all I used to see was the most beautiful little thing that I had ever seen and could not believe that I had a part in bringing him into this world!He is now 2 and a halfish and even now, when I see people that I have not seen in a while and show them pictures of him, (yes I am a typical baby bore), I am still confused how they can say that he is a cutie or he's lovely, followed by the statement that he is the spitting image of me! Honestly, I am not looking for sympathy, I am just remembering my childhood and how strangers and even people I knew would treat me and my sister because of the way we looked.I even get some of the same feelings of dread that I had as a child, when I see people staring at him when we are out n about. I am frightened that he will go thru what I went thru and this upsets me.Knowing this, I myself had an operation last year were a piece of ligament was removed from my leg and used to suspend the upper eyelid on each side. I felt the benefits pretty much straight away, as I noticed that my head was not held back as much.When my wife and I talk about having corrective surgery for ph, we are scared, with the usual thoughts that I am sure you all have had. But seeing some of the pics that hve been posted it adds to our combined strength and conviction that this is the correct thing to do.I will finish now, and hope that I have not bored you all to sleep.I would welcome any msgs back and will check for these tomorrow.Take careRichie

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hello

Thanks for your response.

Looking back on the birth of ph, I felt that both my wife

(Rhone) and myself thought we were as prepared as we could be for

the chance that ph would have BPES, but when he actually came

into the world, all that went out the window, as we were just so in

awe of this beautiful little person that came into our lives!!!!

We feel that now he is not long from starting pre-school, it is the

right time to consult someone about sugery. My wife is an Office

Manager in the Ophthalmology Dept in the hospital that we work in.

The consultant that she works for is a good friend and has suggested

Leatherbarrow, an old friend of his, and one of the foremost

Oculoplastic Surgeons around. He is based in the Manchester Royal

Eye Hospital.

Joe's eyes do not seem to be as bad as mine, as mine were not as bad

as my sisters, as her's were not as nbbad as our dad's. It's just

that he does'nt try to open as much as they can, which is why I

suppose they called it 'lazy upper ptosis'. (I hope the spelling was

correct!!!)

Are you considering surgery for your little one?

Take care

Richie

> >

> > Hello

> >

> > My name is Richie, and I was overwhlemed to find this support

> group!!

> >

> > This explains why I am about to write this saga. So I apologise

to

> > all who read it, and understand those who close it after a

couple

> of

> > lines, but I just need to get a couple of things off my chest

> before

> > I start talking to you all.

> >

> > I'm 36 and up to the age of 22 I had never even seen anyone else

> > with Blepharophimosis (forgive me if I get any spelling wrong)

> > unless they were my sister, my dad or 2 of my aunties on my

dad's

> > side.

> >

> > Even at that time I never even new the name for what we had. No

> one

> > on my dad's side ever wanted to talk about this, and this seemed

> > normal until I started moving around the country. People would

ask

> > me what was up with my eyes, and I would tell them that I was

> short

> > sighted and that's why I wore glasses!!!!! But I knew what they

> > really meant.

> >

> > I found out what it was called at age 29, and looked into it a

> > little but there didnt seem to be much out there at the time.

> >

> > I work in a major Hospital in Liverpool, and have actully

married

> > the Office Manager from the Ophthalmology Dept. She says it was

so

> I

> > could find out more information, easier. I keep telling her it

was

> > for the money!

> >

> > We had a little boy, ph in November of 2003, and even though

> we

> > knew it was 50/50 whether or not he would have this, we went

ahead

> > and did it. Of course he has it, but when I used to watch just

> after

> > he was born, all I used to see was the most beautiful little

thing

> > that I had ever seen and could not believe that I had a part in

> > bringing him into this world!

> >

> > He is now 2 and a halfish and even now, when I see people that I

> > have not seen in a while and show them pictures of him, (yes I

am

> a

> > typical baby bore), I am still confused how they can say that he

> is

> > a cutie or he's lovely, followed by the statement that he is the

> > spitting image of me! Honestly, I am not looking for sympathy, I

> am

> > just remembering my childhood and how strangers and even people

I

> > knew would treat me and my sister because of the way we looked.

> >

> > I even get some of the same feelings of dread that I had as a

> child,

> > when I see people staring at him when we are out n about. I am

> > frightened that he will go thru what I went thru and this upsets

> me.

> >

> > Knowing this, I myself had an operation last year were a piece

of

> > ligament was removed from my leg and used to suspend the upper

> > eyelid on each side. I felt the benefits pretty much straight

> away,

> > as I noticed that my head was not held back as much.

> >

> > When my wife and I talk about having corrective surgery for

> ph,

> > we are scared, with the usual thoughts that I am sure you all

have

> > had. But seeing some of the pics that hve been posted it adds to

> our

> > combined strength and conviction that this is the correct thing

to

> > do.

> >

> > I will finish now, and hope that I have not bored you all to

sleep.

> >

> > I would welcome any msgs back and will check for these tomorrow.

> >

> > Take care

> >

> > Richie

> >

>

[Guest guest]

Bryony

Many thanks for the response.

I totally relate to your example of other peoples

curiosity/stupidity (which ever one you think is more apt!!!)

My 1st memory was of playing in the street as a young child (4 or

5), and an old gentleman was walking up to me smiling. As he got

closer, the smile turned to a look of disgust as he noticed the way

I looked.

He bent right down to my face and shouted " Why don't you get back to

where you come from? " (Obviously an ignorant racist who thought he

was being confronted by someone from oriental origins)

I looked up at him and said " Well I would if I could, but I am

waiting for my mum to come, as she won't let me cross the road on my

own!!! "

He never spoke to me again, but it was no loss to me.

Again thanks for the welcome.

Take care, Rocky!!!!!

Richie

--- In blepharophimosis , " Bryony " <bryony2@...>

wrote:

>

> Hi Richie

>

> This group is great for info on BPES, I am sure any of your

worries or

> questions many others will share or be able to answer.

>

> I have the condition and hated the comments I got when I was a

child, my mum

> tells me children used to come up into my face and ask if I was

blind and

> instead of getting upset or answering I just used to punch them,

luckily I

> have grown out of that!!!

>

> Good luck with finding out all you need to know.

>

> Bryony

>

> blepharophimosis Forgive me, I'm new to all this

>

> Hello

>

> My name is Richie, and I was overwhlemed to find this support

group!!

>

> This explains why I am about to write this saga. So I apologise to

> all who read it, and understand those who close it after a couple

of

> lines, but I just need to get a couple of things off my chest

before

> I start talking to you all.

>

> I'm 36 and up to the age of 22 I had never even seen anyone else

> with Blepharophimosis (forgive me if I get any spelling wrong)

> unless they were my sister, my dad or 2 of my aunties on my dad's

> side.

>

> Even at that time I never even new the name for what we had. No

one

> on my dad's side ever wanted to talk about this, and this seemed

> normal until I started moving around the country. People would ask

> me what was up with my eyes, and I would tell them that I was

short

> sighted and that's why I wore glasses!!!!! But I knew what they

> really meant.

>

> I found out what it was called at age 29, and looked into it a

> little but there didnt seem to be much out there at the time.

>

> I work in a major Hospital in Liverpool, and have actully married

> the Office Manager from the Ophthalmology Dept. She says it was so

I

> could find out more information, easier. I keep telling her it was

> for the money!

>

> We had a little boy, ph in November of 2003, and even though

we

> knew it was 50/50 whether or not he would have this, we went ahead

> and did it. Of course he has it, but when I used to watch just

after

> he was born, all I used to see was the most beautiful little thing

> that I had ever seen and could not believe that I had a part in

> bringing him into this world!

>

> He is now 2 and a halfish and even now, when I see people that I

> have not seen in a while and show them pictures of him, (yes I am

a

> typical baby bore), I am still confused how they can say that he

is

> a cutie or he's lovely, followed by the statement that he is the

> spitting image of me! Honestly, I am not looking for sympathy, I

am

> just remembering my childhood and how strangers and even people I

> knew would treat me and my sister because of the way we looked.

>

> I even get some of the same feelings of dread that I had as a

child,

> when I see people staring at him when we are out n about. I am

> frightened that he will go thru what I went thru and this upsets

me.

>

> Knowing this, I myself had an operation last year were a piece of

> ligament was removed from my leg and used to suspend the upper

> eyelid on each side. I felt the benefits pretty much straight

away,

> as I noticed that my head was not held back as much.

>

> When my wife and I talk about having corrective surgery for

ph,

> we are scared, with the usual thoughts that I am sure you all have

> had. But seeing some of the pics that hve been posted it adds to

our

> combined strength and conviction that this is the correct thing to

> do.

>

> I will finish now, and hope that I have not bored you all to sleep.

>

> I would welcome any msgs back and will check for these tomorrow.

>

> Take care

>

> Richie

>

>

>

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.9.7/379 - Release Date:

29/06/2006

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.9.7/379 - Release Date:

29/06/2006

>

[Guest guest]

Hi Richie

It’s terrible that children should

experience such things, the tormentor being an adult seems to make it even

worse, great reply J People make no comments anymore about the shape of my eyes, I

guess attitude have moved on and people are more accepting they assume I am

oriental and that’s that. I do get comments about the watering as

they think I am crying and are concerned, well it’s nice to know people

care!

I am 27 and have LOADS of BPES in my family;

my daughter is 4 and was unaffected which was marvellous although I was

prepared for her to have it too, I was also the first female in the family to

EVER have a child naturally. We have all had the corrective surgery and

you can see the advanced in technology through the generations, I understand

how worrying it must be to put your child through surgery but I believe in the

long run it will be worth it. I read all the parents’ postings and

they all share your anxiety but after it is all over they are all

thrilled. I had my surgery at Great

Ormond Street with Dr Collin as my surgeon as have

many others.

Well bets get on as I have a million and

one things to do!!

Take care

Bryony

From:

blepharophimosis

[mailto:blepharophimosis ]

On Behalf Of rnr_kelly

Sent: 01 July 2006 17:49

blepharophimosis

Subject: blepharophimosis Re:

Forgive me, I'm new to all this

Bryony

Many thanks for the response.

I totally relate to your example of other peoples

curiosity/stupidity (which ever one you think is more apt!!!)

My 1st memory was of playing in the street as a young child (4 or

5), and an old gentleman was walking up to me smiling. As he got

closer, the smile turned to a look of disgust as he noticed the way

I looked.

He bent right down to my face and shouted " Why don't you get back to

where you come from? " (Obviously an ignorant racist who thought he

was being confronted by someone from oriental origins)

I looked up at him and said " Well I would if I could, but I am

waiting for my mum to come, as she won't let me cross the road on my

own!!! "

He never spoke to me again, but it was no loss to me.

Again thanks for the welcome.

Take care, Rocky!!!!!

Richie

--- In blepharophimosis ,

" Bryony " <bryony2@...>

wrote:

>

> Hi Richie

>

> This group is great for info on BPES, I am sure any of your

worries or

> questions many others will share or be able to answer.

>

> I have the condition and hated the comments I got when I was a

child, my mum

> tells me children used to come up into my face and ask if I was

blind and

> instead of getting upset or answering I just used to punch them,

luckily I

> have grown out of that!!!

>

> Good luck with finding out all you need to know.

>

> Bryony

>

> blepharophimosis Forgive me, I'm new to all this

>

> Hello

>

> My name is Richie, and I was overwhlemed to find this support

group!!

>

> This explains why I am about to write this saga. So I apologise to

> all who read it, and understand those who close it after a couple

of

> lines, but I just need to get a couple of things off my chest

before

> I start talking to you all.

>

> I'm 36 and up to the age of 22 I had never even seen anyone else

> with Blepharophimosis (forgive me if I get any spelling wrong)

> unless they were my sister, my dad or 2 of my aunties on my dad's

> side.

>

> Even at that time I never even new the name for what we had. No

one

> on my dad's side ever wanted to talk about this, and this seemed

> normal until I started moving around the country. People would ask

> me what was up with my eyes, and I would tell them that I was

short

> sighted and that's why I wore glasses!!!!! But I knew what they

> really meant.

>

> I found out what it was called at age 29, and looked into it a

> little but there didnt seem to be much out there at the time.

>

> I work in a major Hospital in Liverpool,

and have actully married

> the Office Manager from the Ophthalmology Dept. She says it was so

I

> could find out more information, easier. I keep telling her it was

> for the money!

>

> We had a little boy, ph in November of 2003, and even though

we

> knew it was 50/50 whether or not he would have this, we went ahead

> and did it. Of course he has it, but when I used to watch just

after

> he was born, all I used to see was the most beautiful little thing

> that I had ever seen and could not believe that I had a part in

> bringing him into this world!

>

> He is now 2 and a halfish and even now, when I see people that I

> have not seen in a while and show them pictures of him, (yes I am

a

> typical baby bore), I am still confused how they can say that he

is

> a cutie or he's lovely, followed by the statement that he is the

> spitting image of me! Honestly, I am not looking for sympathy, I

am

> just remembering my childhood and how strangers and even people I

> knew would treat me and my sister because of the way we looked.

>

> I even get some of the same feelings of dread that I had as a

child,

> when I see people staring at him when we are out n about. I am

> frightened that he will go thru what I went thru and this upsets

me.

>

> Knowing this, I myself had an operation last year were a piece of

> ligament was removed from my leg and used to suspend the upper

> eyelid on each side. I felt the benefits pretty much straight

away,

> as I noticed that my head was not held back as much.

>

> When my wife and I talk about having corrective surgery for

ph,

> we are scared, with the usual thoughts that I am sure you all have

> had. But seeing some of the pics that hve been posted it adds to

our

> combined strength and conviction that this is the correct thing to

> do.

>

> I will finish now, and hope that I have not bored you all to sleep.

>

> I would welcome any msgs back and will check for these tomorrow.

>

> Take care

>

> Richie

>

>

>

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.9.7/379 - Release Date:

29/06/2006

>

>

>

> --

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> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.9.7/379 - Release Date:

29/06/2006

>

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Checked by AVG Free Edition.

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Checked by AVG Free Edition.

Version: 7.1.394 / Virus Database: 268.9.8/380 - Release Date: 30/06/2006

[Guest guest]

Hi Richie,

Welcome to the group. You've come to the right place for support,

information and cyber hugs whenever you need them!

You wrote many things that I myself feel. I'm 32, with a 2 and 1/2

year daughter with BPES. Like you, I thought I, my father, and 2

sisters were the only ones who have this condition and once I found

this amazing group, a sigh of relief and joy overwhelmed me. It was

like YES!! FINALLY!!! MORE NORMAL PEOPLE LIKE ME!!! :-)

On occassion, I have anxiety over going into the idiotic public with

my daughter and become victim of their stares and comments.

Whenever I get caught up in these emotions, I worry about my

daughter's future and fear for the same hurtful childhood as I had.

And what's even more mind boggling is when I see fellow parents

pointing out my daughter to their children with the " hey look at

her " words whispered into their ears. Whenever I notice this idiot

moment, I worry more about what the future holds for my daughter

when idiots are raising idiots of the future.

It's easy to get so consumed with these negatives emotions as we

both grew up with no knowledge of BPES and feeling alone in the

world. But you have to step back and realize that you really didn't

have a hard life yourself. You have a great job, a wife, and a

son. So what's so wrong with having small eyes again?

If you shine confidence and self acceptance, you'll prevent low self-

esteem on your child. Raise your son to have the knowledge of BPES

and show him that the life with it isn't all that bad. He'll get

teased in school even if he had gigantic eyes!! I was teased for

many things other than my eyes. It's part of growing up. It's part

of adolesence; it's life.

A quick question for you. You mentioned you recently had surgery

with the tissue from the leg. Was this your first surgery? And, if

so, do you have any before and after pictures? I'm curious what the

results are in adults as I often thought about having more

corrective surgery as an adult. I hope you don't mind my asking for

photos. :-)

Again, welcome to the family and hope that you will find all the

comfort and information that you are looking for.

Cheers!

Min

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

wrote:

>

> Hello

>

> My name is Richie, and I was overwhlemed to find this support

group!!

>

> This explains why I am about to write this saga. So I apologise to

> all who read it, and understand those who close it after a couple

of

> lines, but I just need to get a couple of things off my chest

before

> I start talking to you all.

>

> I'm 36 and up to the age of 22 I had never even seen anyone else

> with Blepharophimosis (forgive me if I get any spelling wrong)

> unless they were my sister, my dad or 2 of my aunties on my dad's

> side.

>

> Even at that time I never even new the name for what we had. No

one

> on my dad's side ever wanted to talk about this, and this seemed

> normal until I started moving around the country. People would ask

> me what was up with my eyes, and I would tell them that I was

short

> sighted and that's why I wore glasses!!!!! But I knew what they

> really meant.

>

> I found out what it was called at age 29, and looked into it a

> little but there didnt seem to be much out there at the time.

>

> I work in a major Hospital in Liverpool, and have actully married

> the Office Manager from the Ophthalmology Dept. She says it was so

I

> could find out more information, easier. I keep telling her it was

> for the money!

>

> We had a little boy, ph in November of 2003, and even though

we

> knew it was 50/50 whether or not he would have this, we went ahead

> and did it. Of course he has it, but when I used to watch just

after

> he was born, all I used to see was the most beautiful little thing

> that I had ever seen and could not believe that I had a part in

> bringing him into this world!

>

> He is now 2 and a halfish and even now, when I see people that I

> have not seen in a while and show them pictures of him, (yes I am

a

> typical baby bore), I am still confused how they can say that he

is

> a cutie or he's lovely, followed by the statement that he is the

> spitting image of me! Honestly, I am not looking for sympathy, I

am

> just remembering my childhood and how strangers and even people I

> knew would treat me and my sister because of the way we looked.

>

> I even get some of the same feelings of dread that I had as a

child,

> when I see people staring at him when we are out n about. I am

> frightened that he will go thru what I went thru and this upsets

me.

>

> Knowing this, I myself had an operation last year were a piece of

> ligament was removed from my leg and used to suspend the upper

> eyelid on each side. I felt the benefits pretty much straight

away,

> as I noticed that my head was not held back as much.

>

> When my wife and I talk about having corrective surgery for

ph,

> we are scared, with the usual thoughts that I am sure you all have

> had. But seeing some of the pics that hve been posted it adds to

our

> combined strength and conviction that this is the correct thing to

> do.

>

> I will finish now, and hope that I have not bored you all to sleep.

>

> I would welcome any msgs back and will check for these tomorrow.

>

> Take care

>

> Richie

>

[Guest guest]

Hi Min, lovely to read this post from you, you are truly amazing as ever.... Clare Teale Herts UK xxminnielin202 <minnielin202@...> wrote: Hi Richie,Welcome to the group. You've come to the right place for support, information and cyber hugs whenever you need them!You wrote many things that I myself feel. I'm 32, with a 2 and 1/2 year daughter with BPES. Like you, I thought I, my father, and 2 sisters were the only ones who have this condition and once I

found this amazing group, a sigh of relief and joy overwhelmed me. It was like YES!! FINALLY!!! MORE NORMAL PEOPLE LIKE ME!!! :-)On occassion, I have anxiety over going into the idiotic public with my daughter and become victim of their stares and comments. Whenever I get caught up in these emotions, I worry about my daughter's future and fear for the same hurtful childhood as I had. And what's even more mind boggling is when I see fellow parents pointing out my daughter to their children with the "hey look at her" words whispered into their ears. Whenever I notice this idiot moment, I worry more about what the future holds for my daughter when idiots are raising idiots of the future.It's easy to get so consumed with these negatives emotions as we both grew up with no knowledge of BPES and feeling alone in the world. But you have to step back and realize that you really didn't have a hard life yourself.

You have a great job, a wife, and a son. So what's so wrong with having small eyes again? If you shine confidence and self acceptance, you'll prevent low self-esteem on your child. Raise your son to have the knowledge of BPES and show him that the life with it isn't all that bad. He'll get teased in school even if he had gigantic eyes!! I was teased for many things other than my eyes. It's part of growing up. It's part of adolesence; it's life. A quick question for you. You mentioned you recently had surgery with the tissue from the leg. Was this your first surgery? And, if so, do you have any before and after pictures? I'm curious what the results are in adults as I often thought about having more corrective surgery as an adult. I hope you don't mind my asking for photos. :-)Again, welcome to the family and hope that you will find all the comfort and information that you are looking for.

Cheers!Min>> Hello> > My name is Richie, and I was overwhlemed to find this support group!!> > This explains why I am about to write this saga. So I apologise to > all who read it, and understand those who close it after a couple of > lines, but I just need to get a couple of things off my chest before > I start talking to you all.> > I'm 36 and up to the age of 22 I had never even seen anyone else > with Blepharophimosis (forgive me if I get any spelling wrong) > unless they were my sister, my dad or 2 of my aunties on my dad's > side.> > Even at that time I never even new the name for what we had. No one > on my dad's side ever wanted to talk about this, and this

seemed > normal until I started moving around the country. People would ask > me what was up with my eyes, and I would tell them that I was short > sighted and that's why I wore glasses!!!!! But I knew what they > really meant.> > I found out what it was called at age 29, and looked into it a > little but there didnt seem to be much out there at the time. > > I work in a major Hospital in Liverpool, and have actully married > the Office Manager from the Ophthalmology Dept. She says it was so I > could find out more information, easier. I keep telling her it was > for the money!> > We had a little boy, ph in November of 2003, and even though we > knew it was 50/50 whether or not he would have this, we went ahead > and did it. Of course he has it, but when I used to watch just after > he was born, all I used to see was the most beautiful

little thing > that I had ever seen and could not believe that I had a part in > bringing him into this world!> > He is now 2 and a halfish and even now, when I see people that I > have not seen in a while and show them pictures of him, (yes I am a > typical baby bore), I am still confused how they can say that he is > a cutie or he's lovely, followed by the statement that he is the > spitting image of me! Honestly, I am not looking for sympathy, I am > just remembering my childhood and how strangers and even people I > knew would treat me and my sister because of the way we looked.> > I even get some of the same feelings of dread that I had as a child, > when I see people staring at him when we are out n about. I am > frightened that he will go thru what I went thru and this upsets me.> > Knowing this, I myself had an operation last year were

a piece of > ligament was removed from my leg and used to suspend the upper > eyelid on each side. I felt the benefits pretty much straight away, > as I noticed that my head was not held back as much.> > When my wife and I talk about having corrective surgery for ph, > we are scared, with the usual thoughts that I am sure you all have > had. But seeing some of the pics that hve been posted it adds to our > combined strength and conviction that this is the correct thing to > do.> > I will finish now, and hope that I have not bored you all to sleep.> > I would welcome any msgs back and will check for these tomorrow.> > Take care> > Richie>

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Min

Many thanks for th post

Am still finding it difficult to come to terms with how many

positive people there are out there who have or have family members

with BPES. It's quite overwhelming!!!

You have made so many good points with regards to how to, for want

of a better phrase, view the world thru BPES eyes! It has given me

alot to think of.

The surgery I had last year was not my 1st. I did have a procedure

done back when I was 11. They cut little slits in te outside and

inside corners of my eyes, and then, from what I remember, they cut

along the upper eye lid, I think to pull up the muscle. This did not

have much of an effect.

The surgery I had last year has helped. I no longer tilt my head

back to see. As for pics, I don't really like getting my picture

taken that much so will have to trawl thru the archives, and see

what I can come up with.

Hope this answers your question.

Take care

Richie

> >

> > Hello

> >

> > My name is Richie, and I was overwhlemed to find this support

> group!!

> >

> > This explains why I am about to write this saga. So I apologise

to

> > all who read it, and understand those who close it after a

couple

> of

> > lines, but I just need to get a couple of things off my chest

> before

> > I start talking to you all.

> >

> > I'm 36 and up to the age of 22 I had never even seen anyone else

> > with Blepharophimosis (forgive me if I get any spelling wrong)

> > unless they were my sister, my dad or 2 of my aunties on my

dad's

> > side.

> >

> > Even at that time I never even new the name for what we had. No

> one

> > on my dad's side ever wanted to talk about this, and this seemed

> > normal until I started moving around the country. People would

ask

> > me what was up with my eyes, and I would tell them that I was

> short

> > sighted and that's why I wore glasses!!!!! But I knew what they

> > really meant.

> >

> > I found out what it was called at age 29, and looked into it a

> > little but there didnt seem to be much out there at the time.

> >

> > I work in a major Hospital in Liverpool, and have actully

married

> > the Office Manager from the Ophthalmology Dept. She says it was

so

> I

> > could find out more information, easier. I keep telling her it

was

> > for the money!

> >

> > We had a little boy, ph in November of 2003, and even though

> we

> > knew it was 50/50 whether or not he would have this, we went

ahead

> > and did it. Of course he has it, but when I used to watch just

> after

> > he was born, all I used to see was the most beautiful little

thing

> > that I had ever seen and could not believe that I had a part in

> > bringing him into this world!

> >

> > He is now 2 and a halfish and even now, when I see people that I

> > have not seen in a while and show them pictures of him, (yes I

am

> a

> > typical baby bore), I am still confused how they can say that he

> is

> > a cutie or he's lovely, followed by the statement that he is the

> > spitting image of me! Honestly, I am not looking for sympathy, I

> am

> > just remembering my childhood and how strangers and even people

I

> > knew would treat me and my sister because of the way we looked.

> >

> > I even get some of the same feelings of dread that I had as a

> child,

> > when I see people staring at him when we are out n about. I am

> > frightened that he will go thru what I went thru and this upsets

> me.

> >

> > Knowing this, I myself had an operation last year were a piece

of

> > ligament was removed from my leg and used to suspend the upper

> > eyelid on each side. I felt the benefits pretty much straight

> away,

> > as I noticed that my head was not held back as much.

> >

> > When my wife and I talk about having corrective surgery for

> ph,

> > we are scared, with the usual thoughts that I am sure you all

have

> > had. But seeing some of the pics that hve been posted it adds to

> our

> > combined strength and conviction that this is the correct thing

to

> > do.

> >

> > I will finish now, and hope that I have not bored you all to

sleep.

> >

> > I would welcome any msgs back and will check for these tomorrow.

> >

> > Take care

> >

> > Richie

> >

>

[Guest guest]

Hi Richie,

I also didn't think your post was a saga and I was really pleased to

read about your little boy who I'm sure is gorgeous. I'm twice as

much of a baby bore than you I'm sure, Abbie is now 11 months. In

any case I wondered if you and your family are going to be able to

get to the London get together? Liverpool is quite a way. I'm in

Notts. so also a bit of a trek. I'm going to try and go myself

as I'm also new to this (I only found this group about a week before

you but everyone seems lovely). Abbie is the first in our family to

have BPES and I felt a bit isolated before I found this group - not

least because even her doctors don't know much about it.

Best wishes to you and your family,

Leah

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

wrote:

>

> Hello

>

> My name is Richie, and I was overwhlemed to find this support

group!!

>

> This explains why I am about to write this saga. So I apologise to

> all who read it, and understand those who close it after a couple

of

> lines, but I just need to get a couple of things off my chest

before

> I start talking to you all.

>

> I'm 36 and up to the age of 22 I had never even seen anyone else

> with Blepharophimosis (forgive me if I get any spelling wrong)

> unless they were my sister, my dad or 2 of my aunties on my dad's

> side.

>

> Even at that time I never even new the name for what we had. No

one

> on my dad's side ever wanted to talk about this, and this seemed

> normal until I started moving around the country. People would ask

> me what was up with my eyes, and I would tell them that I was

short

> sighted and that's why I wore glasses!!!!! But I knew what they

> really meant.

>

> I found out what it was called at age 29, and looked into it a

> little but there didnt seem to be much out there at the time.

>

> I work in a major Hospital in Liverpool, and have actully married

> the Office Manager from the Ophthalmology Dept. She says it was so

I

> could find out more information, easier. I keep telling her it was

> for the money!

>

> We had a little boy, ph in November of 2003, and even though

we

> knew it was 50/50 whether or not he would have this, we went ahead

> and did it. Of course he has it, but when I used to watch just

after

> he was born, all I used to see was the most beautiful little thing

> that I had ever seen and could not believe that I had a part in

> bringing him into this world!

>

> He is now 2 and a halfish and even now, when I see people that I

> have not seen in a while and show them pictures of him, (yes I am

a

> typical baby bore), I am still confused how they can say that he

is

> a cutie or he's lovely, followed by the statement that he is the

> spitting image of me! Honestly, I am not looking for sympathy, I

am

> just remembering my childhood and how strangers and even people I

> knew would treat me and my sister because of the way we looked.

>

> I even get some of the same feelings of dread that I had as a

child,

> when I see people staring at him when we are out n about. I am

> frightened that he will go thru what I went thru and this upsets

me.

>

> Knowing this, I myself had an operation last year were a piece of

> ligament was removed from my leg and used to suspend the upper

> eyelid on each side. I felt the benefits pretty much straight

away,

> as I noticed that my head was not held back as much.

>

> When my wife and I talk about having corrective surgery for

ph,

> we are scared, with the usual thoughts that I am sure you all have

> had. But seeing some of the pics that hve been posted it adds to

our

> combined strength and conviction that this is the correct thing to

> do.

>

> I will finish now, and hope that I have not bored you all to sleep.

>

> I would welcome any msgs back and will check for these tomorrow.

>

> Take care

>

> Richie

>

[Guest guest]

Leah

Many thanks for the welcome.

What are the details of the London get together? I thought I did see

something about it, but was not sure.I you can let me know I will

check diaries n such.

I ope you don't mind me asking, but I never knew that 2 people who

did not have BPES coulf have a child with it. Has it skipped a

generation or something, or are there certain factors that need to

come together for this to happen? If this seems a bit too personal

then I'm sorry! Just tell me to mind my own business.

Anyway take care and speak to you soon.

Richie

> >

> > Hello

> >

> > My name is Richie, and I was overwhlemed to find this support

> group!!

> >

> > This explains why I am about to write this saga. So I apologise

to

> > all who read it, and understand those who close it after a

couple

> of

> > lines, but I just need to get a couple of things off my chest

> before

> > I start talking to you all.

> >

> > I'm 36 and up to the age of 22 I had never even seen anyone else

> > with Blepharophimosis (forgive me if I get any spelling wrong)

> > unless they were my sister, my dad or 2 of my aunties on my

dad's

> > side.

> >

> > Even at that time I never even new the name for what we had. No

> one

> > on my dad's side ever wanted to talk about this, and this seemed

> > normal until I started moving around the country. People would

ask

> > me what was up with my eyes, and I would tell them that I was

> short

> > sighted and that's why I wore glasses!!!!! But I knew what they

> > really meant.

> >

> > I found out what it was called at age 29, and looked into it a

> > little but there didnt seem to be much out there at the time.

> >

> > I work in a major Hospital in Liverpool, and have actully

married

> > the Office Manager from the Ophthalmology Dept. She says it was

so

> I

> > could find out more information, easier. I keep telling her it

was

> > for the money!

> >

> > We had a little boy, ph in November of 2003, and even though

> we

> > knew it was 50/50 whether or not he would have this, we went

ahead

> > and did it. Of course he has it, but when I used to watch just

> after

> > he was born, all I used to see was the most beautiful little

thing

> > that I had ever seen and could not believe that I had a part in

> > bringing him into this world!

> >

> > He is now 2 and a halfish and even now, when I see people that I

> > have not seen in a while and show them pictures of him, (yes I

am

> a

> > typical baby bore), I am still confused how they can say that he

> is

> > a cutie or he's lovely, followed by the statement that he is the

> > spitting image of me! Honestly, I am not looking for sympathy, I

> am

> > just remembering my childhood and how strangers and even people

I

> > knew would treat me and my sister because of the way we looked.

> >

> > I even get some of the same feelings of dread that I had as a

> child,

> > when I see people staring at him when we are out n about. I am

> > frightened that he will go thru what I went thru and this upsets

> me.

> >

> > Knowing this, I myself had an operation last year were a piece

of

> > ligament was removed from my leg and used to suspend the upper

> > eyelid on each side. I felt the benefits pretty much straight

> away,

> > as I noticed that my head was not held back as much.

> >

> > When my wife and I talk about having corrective surgery for

> ph,

> > we are scared, with the usual thoughts that I am sure you all

have

> > had. But seeing some of the pics that hve been posted it adds to

> our

> > combined strength and conviction that this is the correct thing

to

> > do.

> >

> > I will finish now, and hope that I have not bored you all to

sleep.

> >

> > I would welcome any msgs back and will check for these tomorrow.

> >

> > Take care

> >

> > Richie

> >

>

[Guest guest]

Hi Richie

The date is: 24th September, 11:00am

It will most probably be near train station, in London.

More details will be announced closer to the date.

I hope that you can come along.

Regards

Shireen

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of rnr_kellySent: 07 July 2006 21:15blepharophimosis Subject: blepharophimosis Re: Forgive me, I'm new to all this

LeahMany thanks for the welcome.What are the details of the London get together? I thought I did see something about it, but was not sure.I you can let me know I will check diaries n such.I ope you don't mind me asking, but I never knew that 2 people who did not have BPES coulf have a child with it. Has it skipped a generation or something, or are there certain factors that need to come together for this to happen? If this seems a bit too personal then I'm sorry! Just tell me to mind my own business.Anyway take care and speak to you soon.Richie> >> > Hello> > > > My name is Richie, and I was overwhlemed to find this support > group!!> > > > This explains why I am about to write this saga. So I apologise to > > all who read it, and understand those who close it after a couple > of > > lines, but I just need to get a couple of things off my chest > before > > I start talking to you all.> > > > I'm 36 and up to the age of 22 I had never even seen anyone else > > with Blepharophimosis (forgive me if I get any spelling wrong) > > unless they were my sister, my dad or 2 of my aunties on my dad's > > side.> > > > Even at that time I never even new the name for what we had. No > one > > on my dad's side ever wanted to talk about this, and this seemed > > normal until I started moving around the country. People would ask > > me what was up with my eyes, and I would tell them that I was > short > > sighted and that's why I wore glasses!!!!! But I knew what they > > really meant.> > > > I found out what it was called at age 29, and looked into it a > > little but there didnt seem to be much out there at the time. > > > > I work in a major Hospital in Liverpool, and have actully married > > the Office Manager from the Ophthalmology Dept. She says it was so > I > > could find out more information, easier. I keep telling her it was > > for the money!> > > > We had a little boy, ph in November of 2003, and even though > we > > knew it was 50/50 whether or not he would have this, we went ahead > > and did it. Of course he has it, but when I used to watch just > after > > he was born, all I used to see was the most beautiful little thing > > that I had ever seen and could not believe that I had a part in > > bringing him into this world!> > > > He is now 2 and a halfish and even now, when I see people that I > > have not seen in a while and show them pictures of him, (yes I am > a > > typical baby bore), I am still confused how they can say that he > is > > a cutie or he's lovely, followed by the statement that he is the > > spitting image of me! Honestly, I am not looking for sympathy, I > am > > just remembering my childhood and how strangers and even people I > > knew would treat me and my sister because of the way we looked.> > > > I even get some of the same feelings of dread that I had as a > child, > > when I see people staring at him when we are out n about. I am > > frightened that he will go thru what I went thru and this upsets > me.> > > > Knowing this, I myself had an operation last year were a piece of > > ligament was removed from my leg and used to suspend the upper > > eyelid on each side. I felt the benefits pretty much straight > away, > > as I noticed that my head was not held back as much.> > > > When my wife and I talk about having corrective surgery for > ph, > > we are scared, with the usual thoughts that I am sure you all have > > had. But seeing some of the pics that hve been posted it adds to > our > > combined strength and conviction that this is the correct thing to > > do.> > > > I will finish now, and hope that I have not bored you all to sleep.> > > > I would welcome any msgs back and will check for these tomorrow.> > > > Take care> > > > Richie> >>

[Guest guest]

Hi Richie,

Welcome to the group. My daughter Naomi who is 3.5 years old has

BPES. No one in our families have it for a far back as we can see.

Apparently for her, it is 'spontaneous mutation'. Don't know whether

it's going to skip a generation but if it does, I'm sure it's going

to confuse the next lot of descendants! I have an older daughter who

does not have BPES.

As for your son being cute, I'm sure he is just gorgeous. I agree

with Min about how we as parents must believe that and shine with

self confidence especially to help our children develop a healthy

self esteem.

Allow me to share this (and after this I'm sure I will be voted the

champion baby bore!!), my husband Ern unbeknownst to me, ( I would

never dare!!!) submitted Naomi's photo a month ago for a 'cute

snapshot' competition. Guess what? Today my little tot walked up the

stage, shook hands with the presenter and received her prize!! She

won second prize. Who would have thought??!! She went up there, with

her glasses and eye tapes on, beaming. I was so happy and excited my

hands were shaking uncontrollably - thus all my photos are

blurred...sigh...

(Ern is away so there was no one to help).

At that moment, I forgot every insensitive, rude and stupid comment I

ever received. And, I am now thinking, wow... there is hope! I'm not

advocating this as standard practice but what Ern did (albeit a bit

fatalistic) showed me that I can be braver and not apologetic about

the way Naomi looks.

A new thing that I'm doing when people stare and say dumb things is

to tell them nonchalantly that Naomi has Blepharophimosis. If people

can talk about their cholesterol, hypertension etc, I can talk about

blepharophimosis. Naomi tells them herself if she's in the mood. If

they say " her eyes are so small " , I say " yes AND they are sooo cute "

all the while smiling at Naomi. Most of the time the person realises

the inappropriate comment and agree with me " oh yes, she's so cute " .

Much better than my early style of almost punching them in the

face!!! I'm 5 feet tall (short) and less than 90 pounds so may not

have been wise anyway. So I guess this way, I protect Naomi (and

myself).

Well, if you are able to, do go for the London get-together. Ern,

Naomi and I were so blessed and encouraged by our meeting the people

who came last December.

Cheers,

[Guest guest]

Thanks for the information. Every day now, I am finding that there

is more to BPES than I thought.

I have so many questions that are in my head, but I want to write

them down properly so that I sound coherent, and not like I need to

be sectioned!!!

Both Rhona and I were made up to hear that Naomi won 2nd prize in

the competition, and even though you recognised the fact that it

could have gone wrong, (a thought that the parents of the kids that

did not have BPES were equally thinking) it just shows that Ern is

besotted with his little girl (obviously a feeling that you both

have), There was no complications or hesitation in the thought

process. It was quite simply, 'my daughter is so cute, she could win

this!!!!' Well done!

As for telling people that stare, calmly what the condition is

called, either gives them a chance to open their minds a little to

take this in, or to walk away even more ignorant than before. It's

quite simply their choice.

You both sound like 2 great parents who are dealing with your

situation brilliantly. What you have said about how you deal with

people staring or making stupid comments, has helped me to re-think

my approach to deal with such occurences.

Yet again thanks for being so welcoming, and that is to all who are

in the group who read this!!!!

Take care

Richie

>

> Hi Richie,

>

> Welcome to the group. My daughter Naomi who is 3.5 years old has

> BPES. No one in our families have it for a far back as we can

see.

> Apparently for her, it is 'spontaneous mutation'. Don't know

whether

> it's going to skip a generation but if it does, I'm sure it's

going

> to confuse the next lot of descendants! I have an older daughter

who

> does not have BPES.

>

> As for your son being cute, I'm sure he is just gorgeous. I agree

> with Min about how we as parents must believe that and shine with

> self confidence especially to help our children develop a healthy

> self esteem.

>

> Allow me to share this (and after this I'm sure I will be voted

the

> champion baby bore!!), my husband Ern unbeknownst to me, ( I

would

> never dare!!!) submitted Naomi's photo a month ago for a 'cute

> snapshot' competition. Guess what? Today my little tot walked up

the

> stage, shook hands with the presenter and received her prize!!

She

> won second prize. Who would have thought??!! She went up there,

with

> her glasses and eye tapes on, beaming. I was so happy and excited

my

> hands were shaking uncontrollably - thus all my photos are

> blurred...sigh...

> (Ern is away so there was no one to help).

>

> At that moment, I forgot every insensitive, rude and stupid

comment I

> ever received. And, I am now thinking, wow... there is hope! I'm

not

> advocating this as standard practice but what Ern did (albeit a

bit

> fatalistic) showed me that I can be braver and not apologetic

about

> the way Naomi looks.

>

> A new thing that I'm doing when people stare and say dumb things

is

> to tell them nonchalantly that Naomi has Blepharophimosis. If

people

> can talk about their cholesterol, hypertension etc, I can talk

about

> blepharophimosis. Naomi tells them herself if she's in the mood.

If

> they say " her eyes are so small " , I say " yes AND they are sooo

cute "

> all the while smiling at Naomi. Most of the time the person

realises

> the inappropriate comment and agree with me " oh yes, she's so

cute " .

> Much better than my early style of almost punching them in the

> face!!! I'm 5 feet tall (short) and less than 90 pounds so may

not

> have been wise anyway. So I guess this way, I protect Naomi (and

> myself).

>

> Well, if you are able to, do go for the London get-together. Ern,

> Naomi and I were so blessed and encouraged by our meeting the

people

> who came last December.

>

> Cheers,

>

>

[Guest guest]

Hi Richie,

Sorry for the delay in reply. I've had a pretty busy weekend so

i've not managed to check the site 'til now. I see Shireen has

already filled you in on the details for the London meeting. I hope

you can make it.

As for your other query - of course I don't mind you asking! I

think that is kind of what this site is for.

When Abbie was found to have a genetic defect they tested me and my

then husband to see if we were carriers, which we weren't (I know

now BPES is dominant so you only need one faulty copy of the gene to

show the effect - this is why as you said a child usually has an

affected parent - unlike for example cystic fibrosis which is

recessive so you only have the illness if both copies are faulty).

They said there had been a new mutation ie the mistake happened when

the chromosome broke when the egg or sperm was made.

I read somewhere that about half of affected people have BPES that

has come about from a new mutation (like Abbie) but I don't know if

that is acurate. In any case when and if Abbie has kids they will

have a 50:50 chance of inheriting BPES depending on whether they get

a normal or faulty copy of chromosome 3 from her. Somewhere in the

past BPES must also have come about as a new mutation in one of your

ancestors but that could be many generations ago.

Hope that helps answer your question.

On a different note how is ph? I'm wondering about the advice

others have been given about the best time for surgery for babies

and toddlers so I'd appreciate any info you could give me about that.

Best wishes,

leah and Abbie.

> > >

> > > Hello

> > >

> > > My name is Richie, and I was overwhlemed to find this support

> > group!!

> > >

> > > This explains why I am about to write this saga. So I

apologise

> to

> > > all who read it, and understand those who close it after a

> couple

> > of

> > > lines, but I just need to get a couple of things off my chest

> > before

> > > I start talking to you all.

> > >

> > > I'm 36 and up to the age of 22 I had never even seen anyone

else

> > > with Blepharophimosis (forgive me if I get any spelling wrong)

> > > unless they were my sister, my dad or 2 of my aunties on my

> dad's

> > > side.

> > >

> > > Even at that time I never even new the name for what we had.

No

> > one

> > > on my dad's side ever wanted to talk about this, and this

seemed

> > > normal until I started moving around the country. People would

> ask

> > > me what was up with my eyes, and I would tell them that I was

> > short

> > > sighted and that's why I wore glasses!!!!! But I knew what

they

> > > really meant.

> > >

> > > I found out what it was called at age 29, and looked into it a

> > > little but there didnt seem to be much out there at the time.

> > >

> > > I work in a major Hospital in Liverpool, and have actully

> married

> > > the Office Manager from the Ophthalmology Dept. She says it

was

> so

> > I

> > > could find out more information, easier. I keep telling her it

> was

> > > for the money!

> > >

> > > We had a little boy, ph in November of 2003, and even

though

> > we

> > > knew it was 50/50 whether or not he would have this, we went

> ahead

> > > and did it. Of course he has it, but when I used to watch just

> > after

> > > he was born, all I used to see was the most beautiful little

> thing

> > > that I had ever seen and could not believe that I had a part

in

> > > bringing him into this world!

> > >

> > > He is now 2 and a halfish and even now, when I see people that

I

> > > have not seen in a while and show them pictures of him, (yes I

> am

> > a

> > > typical baby bore), I am still confused how they can say that

he

> > is

> > > a cutie or he's lovely, followed by the statement that he is

the

> > > spitting image of me! Honestly, I am not looking for sympathy,

I

> > am

> > > just remembering my childhood and how strangers and even

people

> I

> > > knew would treat me and my sister because of the way we looked.

> > >

> > > I even get some of the same feelings of dread that I had as a

> > child,

> > > when I see people staring at him when we are out n about. I am

> > > frightened that he will go thru what I went thru and this

upsets

> > me.

> > >

> > > Knowing this, I myself had an operation last year were a piece

> of

> > > ligament was removed from my leg and used to suspend the upper

> > > eyelid on each side. I felt the benefits pretty much straight

> > away,

> > > as I noticed that my head was not held back as much.

> > >

> > > When my wife and I talk about having corrective surgery for

> > ph,

> > > we are scared, with the usual thoughts that I am sure you all

> have

> > > had. But seeing some of the pics that hve been posted it adds

to

> > our

> > > combined strength and conviction that this is the correct

thing

> to

> > > do.

> > >

> > > I will finish now, and hope that I have not bored you all to

> sleep.

> > >

> > > I would welcome any msgs back and will check for these

tomorrow.

> > >

> > > Take care

> > >

> > > Richie

> > >

> >

>

[Guest guest]

Leah

Thanks for the reply.

No worries bout the time scale, we are parents so it is

understandable that we are too busy somtimes.

Thanks for answering my question. It just helps me to understand a

little bit more about BPES. I never had any questions earlier in

life, due to the lack of communication. My sister and I just had to

get on with it. I don't want that for ph.

I know there will come a time, as it did with me, that he will want

to know why he is different than the other so called 'normal'

people. I just want to be able to communicate to him that he is not

abnormal. I need to do this, as when Rhona and I discussed having a

baby, we both new that there was a 50-50 chance of him having BPES.

I knew in my heart of hearts that he would have it, but still

carried on. Thru all the happiness of having a fantastic little boy

who brightens up the lifes of everyone who talks to him, I have

carried a guilt that I have done this to him.

I will never be able to repay him for this, but I can make it easier

for him.

As for the surgery, we have and will for a while be debating this

between ourselves. On one hand, his sight is perfect so there is no

need for the surgery to be done for that. If we have it done, it

will be purely cosmetic.

In my day the other kids were bad enough, but these days, bullying

has gone too far. Some of the kids these days can be relentless. I

know they can pick on kids who don't wear the rights clothes, or

kids who are over weight etc, so I feel as though the surgery will

lessen the look by the time he goes into mainstream school. This

will at least give him a fighting chance, and he need not make the

choice I made, and screw up his education.

Anyway I think I have exposed you to enough of my rantings, so I

will sign off.

Take care all of you!!

Richie

> > > >

> > > > Hello

> > > >

> > > > My name is Richie, and I was overwhlemed to find this

support

> > > group!!

> > > >

> > > > This explains why I am about to write this saga. So I

> apologise

> > to

> > > > all who read it, and understand those who close it after a

> > couple

> > > of

> > > > lines, but I just need to get a couple of things off my

chest

> > > before

> > > > I start talking to you all.

> > > >

> > > > I'm 36 and up to the age of 22 I had never even seen anyone

> else

> > > > with Blepharophimosis (forgive me if I get any spelling

wrong)

> > > > unless they were my sister, my dad or 2 of my aunties on my

> > dad's

> > > > side.

> > > >

> > > > Even at that time I never even new the name for what we had.

> No

> > > one

> > > > on my dad's side ever wanted to talk about this, and this

> seemed

> > > > normal until I started moving around the country. People

would

> > ask

> > > > me what was up with my eyes, and I would tell them that I

was

> > > short

> > > > sighted and that's why I wore glasses!!!!! But I knew what

> they

> > > > really meant.

> > > >

> > > > I found out what it was called at age 29, and looked into it

a

> > > > little but there didnt seem to be much out there at the

time.

> > > >

> > > > I work in a major Hospital in Liverpool, and have actully

> > married

> > > > the Office Manager from the Ophthalmology Dept. She says it

> was

> > so

> > > I

> > > > could find out more information, easier. I keep telling her

it

> > was

> > > > for the money!

> > > >

> > > > We had a little boy, ph in November of 2003, and even

> though

> > > we

> > > > knew it was 50/50 whether or not he would have this, we went

> > ahead

> > > > and did it. Of course he has it, but when I used to watch

just

> > > after

> > > > he was born, all I used to see was the most beautiful little

> > thing

> > > > that I had ever seen and could not believe that I had a part

> in

> > > > bringing him into this world!

> > > >

> > > > He is now 2 and a halfish and even now, when I see people

that

> I

> > > > have not seen in a while and show them pictures of him, (yes

I

> > am

> > > a

> > > > typical baby bore), I am still confused how they can say

that

> he

> > > is

> > > > a cutie or he's lovely, followed by the statement that he is

> the

> > > > spitting image of me! Honestly, I am not looking for

sympathy,

> I

> > > am

> > > > just remembering my childhood and how strangers and even

> people

> > I

> > > > knew would treat me and my sister because of the way we

looked.

> > > >

> > > > I even get some of the same feelings of dread that I had as

a

> > > child,

> > > > when I see people staring at him when we are out n about. I

am

> > > > frightened that he will go thru what I went thru and this

> upsets

> > > me.

> > > >

> > > > Knowing this, I myself had an operation last year were a

piece

> > of

> > > > ligament was removed from my leg and used to suspend the

upper

> > > > eyelid on each side. I felt the benefits pretty much

straight

> > > away,

> > > > as I noticed that my head was not held back as much.

> > > >

> > > > When my wife and I talk about having corrective surgery for

> > > ph,

> > > > we are scared, with the usual thoughts that I am sure you

all

> > have

> > > > had. But seeing some of the pics that hve been posted it

adds

> to

> > > our

> > > > combined strength and conviction that this is the correct

> thing

> > to

> > > > do.

> > > >

> > > > I will finish now, and hope that I have not bored you all to

> > sleep.

> > > >

> > > > I would welcome any msgs back and will check for these

> tomorrow.

> > > >

> > > > Take care

> > > >

> > > > Richie

> > > >

> > >

> >

>

[Guest guest]

Hi Richie, its Clare - Herts UK Hope this message finds you all well. I wanted to give you my family history and what a genetic counsellor - Great Ormand Street London, told me a while back when I was pregnant with my 2nd child. I was the first to have BPES all those 37 years ago. Mine was just one of those things, a deficiency in the gene apparantly. I then had a 50/50 chance of passing onto my baby. My first girl (Emy) had it and my 2nd boy (Sam) did not. Emy has a 50/50 chance of passing it on to her children, my son who doesnt have BPES cannot pass it on to his children - unless his children have another one off like me. I have been told it cannot skip generations, if you have it you know because of the obvious signs, if you dont have it you cannot pass it on. My daughter is 10 years of age now,

and we had surgery at 4 years of age, so tiny and so precious....however for us it was the best thing we did. Her eyes are quite amazing. Would love to meet your family if you can come to London for the get together, its always quite an amazing experience, especially to meet so many families dealing with similar issues, we always come away feeling very uplifted and supported. Keep asking questions and collecting information for your son, it sounds like you are quite fabulous parents. Regards Clare and Emy rnr_kelly <rnr_kelly@...> wrote: LeahThanks for the reply.No worries bout the time scale, we are parents so it is understandable that we are too busy somtimes.Thanks for answering my question. It just helps me to understand a little bit more about BPES. I never had any questions earlier in life, due to the lack of communication. My sister and I just had to get on with it. I don't want that for ph.I know there will come a time, as it did with me, that he will want to know why he is different than the other so called 'normal' people. I just want to be able to communicate to him that he is not abnormal. I need to do this, as when Rhona and I discussed having a baby, we both new that there was a 50-50 chance of him having BPES.I knew in my heart of hearts that he would have it, but still

carried on. Thru all the happiness of having a fantastic little boy who brightens up the lifes of everyone who talks to him, I have carried a guilt that I have done this to him.I will never be able to repay him for this, but I can make it easier for him.As for the surgery, we have and will for a while be debating this between ourselves. On one hand, his sight is perfect so there is no need for the surgery to be done for that. If we have it done, it will be purely cosmetic. In my day the other kids were bad enough, but these days, bullying has gone too far. Some of the kids these days can be relentless. I know they can pick on kids who don't wear the rights clothes, or kids who are over weight etc, so I feel as though the surgery will lessen the look by the time he goes into mainstream school. This will at least give him a fighting chance, and he need not make the choice I made, and screw up his

education.Anyway I think I have exposed you to enough of my rantings, so I will sign off.Take care all of you!!Richie> > > >> > > > Hello> > > > > > > > My name is

Richie, and I was overwhlemed to find this support > > > group!!> > > > > > > > This explains why I am about to write this saga. So I > apologise > > to > > > > all who read it, and understand those who close it after a > > couple > > > of > > > > lines, but I just need to get a couple of things off my chest > > > before > > > > I start talking to you all.> > > > > > > > I'm 36 and up to the age of 22 I had never even seen anyone > else > > > > with Blepharophimosis (forgive me if I get any spelling wrong) > > > > unless they were my sister, my dad or 2 of my aunties on my > > dad's > > > > side.> > > > > > > > Even at that time I never even new the name for what we had. > No >

> > one > > > > on my dad's side ever wanted to talk about this, and this > seemed > > > > normal until I started moving around the country. People would > > ask > > > > me what was up with my eyes, and I would tell them that I was > > > short > > > > sighted and that's why I wore glasses!!!!! But I knew what > they > > > > really meant.> > > > > > > > I found out what it was called at age 29, and looked into it a > > > > little but there didnt seem to be much out there at the time. > > > > > > > > I work in a major Hospital in Liverpool, and have actully > > married > > > > the Office Manager from the Ophthalmology Dept. She says it > was > > so > > > I > > > > could find out more

information, easier. I keep telling her it > > was > > > > for the money!> > > > > > > > We had a little boy, ph in November of 2003, and even > though > > > we > > > > knew it was 50/50 whether or not he would have this, we went > > ahead > > > > and did it. Of course he has it, but when I used to watch just > > > after > > > > he was born, all I used to see was the most beautiful little > > thing > > > > that I had ever seen and could not believe that I had a part > in > > > > bringing him into this world!> > > > > > > > He is now 2 and a halfish and even now, when I see people that > I > > > > have not seen in a while and show them pictures of him, (yes I > > am > > > a >

> > > typical baby bore), I am still confused how they can say that > he > > > is > > > > a cutie or he's lovely, followed by the statement that he is > the > > > > spitting image of me! Honestly, I am not looking for sympathy, > I > > > am > > > > just remembering my childhood and how strangers and even > people > > I > > > > knew would treat me and my sister because of the way we looked.> > > > > > > > I even get some of the same feelings of dread that I had as a > > > child, > > > > when I see people staring at him when we are out n about. I am > > > > frightened that he will go thru what I went thru and this > upsets > > > me.> > > > > > > > Knowing this, I myself had an operation last

year were a piece > > of > > > > ligament was removed from my leg and used to suspend the upper > > > > eyelid on each side. I felt the benefits pretty much straight > > > away, > > > > as I noticed that my head was not held back as much.> > > > > > > > When my wife and I talk about having corrective surgery for > > > ph, > > > > we are scared, with the usual thoughts that I am sure you all > > have > > > > had. But seeing some of the pics that hve been posted it adds > to > > > our > > > > combined strength and conviction that this is the correct > thing > > to > > > > do.> > > > > > > > I will finish now, and hope that I have not bored you all to > > sleep.> > > >

> > > > I would welcome any msgs back and will check for these > tomorrow.> > > > > > > > Take care> > > > > > > > Richie> > > >> > >> >>

Want to be your own boss? Learn how on Small Business.

[Guest guest]

Dear Richie,

I'm really touched by your honesty in this message and your others.

Before I go on I think you must not punish yourself. In no way have

you " done " anything to ph. What you have given him is love and

understanding and to everyone else the gift of the company and joy

of your special boy. He has a loving family who adore him and to me

that makes him the luckiest child in the world.

Parental guilt is great isn't it! When I was pregnant with Abbie

she wasn't growing well and was finally born (when I got bad pre-

eclampsia) at 30 weeks weighing 2lb! I tortured myself that I had

somehow failed in my duty as a mother before it began by starving

her in the womb. I can see now that there is nothing I could have

done to prevent it and obviously I didn't choose it for her but it

took me a very long time to accept that it wasn't my fault, just as

with ph it's not your fault.

You don't have to repay him as there's nothing to repay. All we

have to do is help our beautiful children grow into happy well

balanced adults by reacting positively to situations and teaching

them the same. Hopefully that will help them to deal with any

ignorant bullies they encounter.

Anyway, feel free to " rant " at any time you like. It would be

lovely to here about how ph and your family are getting along.

I hope you can make the meeting but in the meantime or if you can't

I'd love to see some photos.

Take care

Leah and Abbie

> > > > >

> > > > > Hello

> > > > >

> > > > > My name is Richie, and I was overwhlemed to find this

> support

> > > > group!!

> > > > >

> > > > > This explains why I am about to write this saga. So I

> > apologise

> > > to

> > > > > all who read it, and understand those who close it after a

> > > couple

> > > > of

> > > > > lines, but I just need to get a couple of things off my

> chest

> > > > before

> > > > > I start talking to you all.

> > > > >

> > > > > I'm 36 and up to the age of 22 I had never even seen

anyone

> > else

> > > > > with Blepharophimosis (forgive me if I get any spelling

> wrong)

> > > > > unless they were my sister, my dad or 2 of my aunties on

my

> > > dad's

> > > > > side.

> > > > >

> > > > > Even at that time I never even new the name for what we

had.

> > No

> > > > one

> > > > > on my dad's side ever wanted to talk about this, and this

> > seemed

> > > > > normal until I started moving around the country. People

> would

> > > ask

> > > > > me what was up with my eyes, and I would tell them that I

> was

> > > > short

> > > > > sighted and that's why I wore glasses!!!!! But I knew what

> > they

> > > > > really meant.

> > > > >

> > > > > I found out what it was called at age 29, and looked into

it

> a

> > > > > little but there didnt seem to be much out there at the

> time.

> > > > >

> > > > > I work in a major Hospital in Liverpool, and have actully

> > > married

> > > > > the Office Manager from the Ophthalmology Dept. She says

it

> > was

> > > so

> > > > I

> > > > > could find out more information, easier. I keep telling

her

> it

> > > was

> > > > > for the money!

> > > > >

> > > > > We had a little boy, ph in November of 2003, and even

> > though

> > > > we

> > > > > knew it was 50/50 whether or not he would have this, we

went

> > > ahead

> > > > > and did it. Of course he has it, but when I used to watch

> just

> > > > after

> > > > > he was born, all I used to see was the most beautiful

little

> > > thing

> > > > > that I had ever seen and could not believe that I had a

part

> > in

> > > > > bringing him into this world!

> > > > >

> > > > > He is now 2 and a halfish and even now, when I see people

> that

> > I

> > > > > have not seen in a while and show them pictures of him,

(yes

> I

> > > am

> > > > a

> > > > > typical baby bore), I am still confused how they can say

> that

> > he

> > > > is

> > > > > a cutie or he's lovely, followed by the statement that he

is

> > the

> > > > > spitting image of me! Honestly, I am not looking for

> sympathy,

> > I

> > > > am

> > > > > just remembering my childhood and how strangers and even

> > people

> > > I

> > > > > knew would treat me and my sister because of the way we

> looked.

> > > > >

> > > > > I even get some of the same feelings of dread that I had

as

> a

> > > > child,

> > > > > when I see people staring at him when we are out n about.

I

> am

> > > > > frightened that he will go thru what I went thru and this

> > upsets

> > > > me.

> > > > >

> > > > > Knowing this, I myself had an operation last year were a

> piece

> > > of

> > > > > ligament was removed from my leg and used to suspend the

> upper

> > > > > eyelid on each side. I felt the benefits pretty much

> straight

> > > > away,

> > > > > as I noticed that my head was not held back as much.

> > > > >

> > > > > When my wife and I talk about having corrective surgery

for

> > > > ph,

> > > > > we are scared, with the usual thoughts that I am sure you

> all

> > > have

> > > > > had. But seeing some of the pics that hve been posted it

> adds

> > to

> > > > our

> > > > > combined strength and conviction that this is the correct

> > thing

> > > to

> > > > > do.

> > > > >

> > > > > I will finish now, and hope that I have not bored you all

to

> > > sleep.

> > > > >

> > > > > I would welcome any msgs back and will check for these

> > tomorrow.

> > > > >

> > > > > Take care

> > > > >

> > > > > Richie

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hi Richie,

Thank you so much for being happy for Naomi. I appreciate your kind words and

encouragement. It was a very 'healing' experience for me and I hope it helps in

some little

way for others too.

Well, I guess it proves one thing! The suspicion we, the parents, have had about

our kids

and their small eyes all along... THEY ARE DARN CUTE!!!

ph sounds like he's a great and friendly kid. If he's got your sense of

humour he'd be

so cool to hang out with : )

As for staying calm when faced with those annoying and rude situations, sigh...

did not

come easy. I actually almost got hit by this man because i yelled at his wife

for staring at

Naomi so hard that Naomi got frightened and cried. You must now think that Ern

and I

must like to live dangerously huh? ha!ha! But hey... if this little fire cracker

can be snuffed

out, I'm sure anyone can do it.

Anyway, welcome again and don't worry about having so many questions. That's why

Shireen set the group up and so far people are so willing to help and share.

Here's a big

hug for ph, Rhona and you.

Cheers

> >

> > Hi Richie,

> >

> > Welcome to the group. My daughter Naomi who is 3.5 years old has

> > BPES. No one in our families have it for a far back as we can

> see.

> > Apparently for her, it is 'spontaneous mutation'. Don't know

> whether

> > it's going to skip a generation but if it does, I'm sure it's

> going

> > to confuse the next lot of descendants! I have an older daughter

> who

> > does not have BPES.

> >

> > As for your son being cute, I'm sure he is just gorgeous. I agree

> > with Min about how we as parents must believe that and shine with

> > self confidence especially to help our children develop a healthy

> > self esteem.

> >

> > Allow me to share this (and after this I'm sure I will be voted

> the

> > champion baby bore!!), my husband Ern unbeknownst to me, ( I

> would

> > never dare!!!) submitted Naomi's photo a month ago for a 'cute

> > snapshot' competition. Guess what? Today my little tot walked up

> the

> > stage, shook hands with the presenter and received her prize!!

> She

> > won second prize. Who would have thought??!! She went up there,

> with

> > her glasses and eye tapes on, beaming. I was so happy and excited

> my

> > hands were shaking uncontrollably - thus all my photos are

> > blurred...sigh...

> > (Ern is away so there was no one to help).

> >

> > At that moment, I forgot every insensitive, rude and stupid

> comment I

> > ever received. And, I am now thinking, wow... there is hope! I'm

> not

> > advocating this as standard practice but what Ern did (albeit a

> bit

> > fatalistic) showed me that I can be braver and not apologetic

> about

> > the way Naomi looks.

> >

> > A new thing that I'm doing when people stare and say dumb things

> is

> > to tell them nonchalantly that Naomi has Blepharophimosis. If

> people

> > can talk about their cholesterol, hypertension etc, I can talk

> about

> > blepharophimosis. Naomi tells them herself if she's in the mood.

> If

> > they say " her eyes are so small " , I say " yes AND they are sooo

> cute "

> > all the while smiling at Naomi. Most of the time the person

> realises

> > the inappropriate comment and agree with me " oh yes, she's so

> cute " .

> > Much better than my early style of almost punching them in the

> > face!!! I'm 5 feet tall (short) and less than 90 pounds so may

> not

> > have been wise anyway. So I guess this way, I protect Naomi (and

> > myself).

> >

> > Well, if you are able to, do go for the London get-together. Ern,

> > Naomi and I were so blessed and encouraged by our meeting the

> people

> > who came last December.

> >

> > Cheers,

> >

> >

>