Re: New to BPES Group. Just had our first Son with BPES.

[Guest guest]

Sam, , Josiah

just wanted to say a big congrats on your baby boy.... i know its not the greatest that he was born with Bleph but...... you have it too so that may help you guys cope better and him cope when he is older.... sounds like you are strong people and love each other very much, good luck with everything.

hope you find all the answers to any of your questions here....

tonikka

(lynden age 9 1st with BPEI)

edmonton alberta canada

Subject: blepharophimosis New to BPES Group. Just had our first Son with BPES.

Josiah was born 1/17/2007. My wife, , and I (Sam) are well at home coping with first baby syndrome - lack of sleep, crying, feeding, clothing and more crying.I've heard of this group because I have BPES. I had had my surgeries at a young age, but never knew what this condition was called until I found this group several years ago. (Actually it never ocurred to me to ask my Optha. I simply assumed it had no name.)Anyway, now we have little Josiah. I knew that BPES could be passed on, and during my wife's pregnancy I kept praying and hoping that he would get my wife's beautiful eyes.At the hospital my mother came in to see the baby and I asked her if his eyes were like mine when I was born. I only intended to get a feel for whether it was possible that it was not like mine. My mom seemed irritated, and said that it looked fine, then she left the room. Later I found out she left to go and cry. I was the only child out of 4 to get BPES and our family does not have a history of it. A mother's heart was broken twice.My wife and I had talked about BPES before we got married. She is a gentle yet strong woman. She had said that if our child did get BPES we would get through it together. She also said that because I have it, I would be able to help our child cope with it. (God had prepared the right woman for me!)Well, anyways, and I are here to learn. We live in Northern Virginia, right out side of Washington DC. We want to begin searching for doctors and hospitals.Thanks for reading.Sam and .

[Guest guest]

Hi Sam,

Thanks for your post. I have BPES and was the only person in my family with BPES until my daughter, Paige, was born. I also didn't know there was a name for it until Paige was born and I found it by searching on the internet when she was about 2 days old. I realized that it had to be some kind of syndrome if I was able to pass it down to her. But I wasn't really shocked when she was born with it. I remember as soon as I delivered her I asked my husband if she had my eyes. It was as if all along I knew she would have it. Maybe mother's intuition???

Anyway, I just want to reassure you that it has actually been a HUGE blessing to be able to explain to Paige that I have the same eyes she has. She just turned 3 so I have started introducing the fact that she will have an operation soon. Because I also had the same operation, it is especially helpful as I explain that she will have an operation just like her mommy had. I show her pictures of what I looked like before my surgery and then tell her that she will have bigger eyes too. The other day she asked to see the picture of me with my small eyes. It is so nice because my mom could never do that for me - she has very big eyes so I definitely couldn't relate - ha!

The best part of explaining the operation to her was when I lifted her eyelids up with my fingers to show her what it would be like after her surgery and she got a huge smile on her face. I think she will do fine - in fact, I know she will. I will be the one who is the basket case!

Your wife sounds wonderful and so supportive and I am so thankful you have her to go through this with. My husband is the same and I definitely know God put him in my life for a reason!

Charlotte, NC

blepharophimosis New to BPES Group. Just had our first Son with BPES.

Josiah was born 1/17/2007. My wife, , and I (Sam) are well at home coping with first baby syndrome - lack of sleep, crying, feeding, clothing and more crying.I've heard of this group because I have BPES. I had had my surgeries at a young age, but never knew what this condition was called until I found this group several years ago. (Actually it never ocurred to me to ask my Optha. I simply assumed it had no name.)Anyway, now we have little Josiah. I knew that BPES could be passed on, and during my wife's pregnancy I kept praying and hoping that he would get my wife's beautiful eyes.At the hospital my mother came in to see the baby and I asked her if his eyes were like mine when I was born. I only intended to get a feel for whether it was possible that it was not like mine. My mom seemed irritated, and said that it looked fine, then she left the room. Later I found out she left to go and cry. I was

the only child out of 4 to get BPES and our family does not have a history of it. A mother's heart was broken twice.My wife and I had talked about BPES before we got married. She is a gentle yet strong woman. She had said that if our child did get BPES we would get through it together. She also said that because I have it, I would be able to help our child cope with it. (God had prepared the right woman for me!)Well, anyways, and I are here to learn. We live in Northern Virginia, right out side of Washington DC. We want to begin searching for doctors and hospitals.Thanks for reading.Sam and .

Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains.

[Guest guest]

Congrats on your new baby!Although I understand your concerns regarding having a child with BPES, please remember that there are many more difficult problems a baby can be born with. Count your blessings that this syndrome is merely cosmetic, and not life threatening. I have thanked God for the last 12 years that my daughter ONLY has BPES.Best wishes with your new bundle of joy!stony_man_9 <playinthepark@...> wrote: Josiah was born 1/17/2007. My wife, , and I (Sam) are well at

home coping with first baby syndrome - lack of sleep, crying, feeding, clothing and more crying. I've heard of this group because I have BPES. I had had my surgeries at a young age, but never knew what this condition was called until I found this group several years ago. (Actually it never ocurred to me to ask my Optha. I simply assumed it had no name.) Anyway, now we have little Josiah. I knew that BPES could be passed on, and during my wife's pregnancy I kept praying and hoping that he would get my wife's beautiful eyes. At the hospital my mother came in to see the baby and I asked her if his eyes were like mine when I was born. I only intended to get a feel for whether it was possible that it was not like mine. My mom seemed irritated, and said that it looked fine, then she left the room. Later I found out she left to go and cry. I was the only child out of 4 to get BPES and

our family does not have a history of it. A mother's heart was broken twice. My wife and I had talked about BPES before we got married. She is a gentle yet strong woman. She had said that if our child did get BPES we would get through it together. She also said that because I have it, I would be able to help our child cope with it. (God had prepared the right woman for me!) Well, anyways, and I are here to learn. We live in Northern Virginia, right out side of Washington DC. We want to begin searching for doctors and hospitals. Thanks for reading. Sam and .

We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

Sam,

While i was reading your email it brought tears to my eyes, because on August 3,2006 i had a beautiful baby girl (samantha) and she was born with Bleph just like her daddy. The whole time i was pregnant i told myself that her eyes would be fine that something like that couldn't happen to my baby, well i was wrong. is also my first baby and my husband was the only one in his family to have Bleph so i was suprised when samantha had it too. but now almost 5 months later i can tell you samantha doesn't even know that she has a problem with her eyes she thinks everything is normal and uses her eyes all the time she wants to see everything. When she was born she didn't even open her eyes until after we came home from the hospital and now she can open them almost halfway. once she started using her eyes she only stops to sleep! I am telling you this because when we brought samantha home i wish someone would have told me this instead i kept wondering if she was ever going to open her eyes? and when she did start using them i had fear that she would stop using them and lose her eyesight all togeather and now i know better. If you have ay questions for someone who is going through raising a baby with BLEPH at the same time feel free to ask

________________________________________________________________________

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[Guest guest]

Thanks for that post Donna:)....You took the words right out of my mouth...As you said there is SO many more tragic syndromes and life threatening diseases your child could be born with....BPES is so minor in comparison! The hardest part with bpes is the stares and comments others make, that is the only time we are reminded that our beautiful son was born with his special eyes:) There is not one thing that makes him any different from any other child besides his little eyelids....and with his new glasses now he doesn't get stared at half as much, sometimes not at all!!! He is also the only one in our family to have this?

-- Re: blepharophimosis New to BPES Group. Just had our first Son with BPES.

Congrats on your new baby!Although I understand your concerns regarding having a child with BPES, please remember that there are many more difficult problems a baby can be born with. Count your blessings that this syndrome is merely cosmetic, and not life threatening. I have thanked God for the last 12 years that my daughter ONLY has BPES.Best wishes with your new bundle of joy!stony_man_9 <playintheparkgmail> wrote:

Josiah was born 1/17/2007. My wife, , and I (Sam) are well at home coping with first baby syndrome - lack of sleep, crying, feeding, clothing and more crying.I've heard of this group because I have BPES. I had had my surgeries at a young age, but never knew what this condition was called until I found this group several years ago. (Actually it never ocurred to me to ask my Optha. I simply assumed it had no name.)Anyway, now we have little Josiah. I knew that BPES could be passed on, and during my wife's pregnancy I kept praying and hoping that he would get my wife's beautiful eyes.At the hospital my mother came in to see the baby and I asked her if his eyes were like mine when I was born. I only intended to get a feel for whether it was possible that it was not like mine. My mom seemed irritated, and said that it looked fine, then she left the room. Later I found out she left to go and cry. I was the only child out of 4 to get BPES and our family does not have a history of it. A mother's heart was broken twice.My wife and I had talked about BPES before we got married. She is a gentle yet strong woman. She had said that if our child did get BPES we would get through it together. She also said that because I have it, I would be able to help our child cope with it. (God had prepared the right woman for me!)Well, anyways, and I are here to learn. We live in Northern Virginia, right out side of Washington DC. We want to begin searching for doctors and hospitals.Thanks for reading.Sam and .

We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list.

[Guest guest]

Hi Sam and Thank you so much for sharing your story, congratulations on the birth of your son. I too had tears in my eyes when I read your e-mail because I could easily relate to your mums reaction to her grandson. I am sure it brought back all of the feelings of when you were born where people would have not been very forthcoming in telling your parents why your eyes would not open. We had the same when our daughter Holly was born nearly 2 years ago. We were very anxious as she was our first child and no-one in the family had this before. It took nearly 5 months to find out she had BPES and it did give us relief that the sydrome had a name so we could research all about it. Your mum not knowing what it was and hence not being able to explain to you must have been awful. On a good note, I agree that when he grows up at least you can pass on the

experience and he will also have your eyes which is something our daughter will not have. Also, if someone has BPES there is a 50% chance of passing the gene down to a baby but girls may also have problems conceiving depending on what type I or II. I would not change my daughter for the world and I think she is perfect in every way. As someone else stated at least it is not life threatening!! Take care Lucy, Hampshire UKstony_man_9 <playinthepark@...> wrote: Josiah was born 1/17/2007. My wife, , and I (Sam) are well at home coping with first baby syndrome - lack of sleep, crying, feeding, clothing and more crying.I've heard of this group because I have BPES. I had had my surgeries at a young age, but never knew what this condition was called until I found this group several years ago. (Actually it never ocurred to me to ask my Optha. I simply assumed it had no name.)Anyway, now we have little Josiah. I knew that BPES could be passed on, and during my wife's pregnancy I kept praying and hoping that he would get my wife's beautiful eyes.At the hospital my mother came in to see the baby and I asked her if his eyes were like mine when I was born. I only intended to get a feel for whether it was possible that it was not like mine. My mom seemed irritated, and said that it looked fine, then she left

the room. Later I found out she left to go and cry. I was the only child out of 4 to get BPES and our family does not have a history of it. A mother's heart was broken twice.My wife and I had talked about BPES before we got married. She is a gentle yet strong woman. She had said that if our child did get BPES we would get through it together. She also said that because I have it, I would be able to help our child cope with it. (God had prepared the right woman for me!)Well, anyways, and I are here to learn. We live in Northern Virginia, right out side of Washington DC. We want to begin searching for doctors and hospitals.Thanks for reading.Sam and .

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[Guest guest]

Lucy;

Thanks for your warm welcome. It is nice to know that there are

people who can understand. I did post some pictures of Josiah.

Sam.

--- In blepharophimosis , Lucy Chidgey <lcgosport@...>

wrote:

>

> Hi Sam and

>

> Thank you so much for sharing your story, congratulations on the

birth of your son. I too had tears in my eyes when I read your e-

mail because I could easily relate to your mums reaction to her

grandson. I am sure it brought back all of the feelings of when you

were born where people would have not been very forthcoming in

telling your parents why your eyes would not open. We had the same

when our daughter Holly was born nearly 2 years ago. We were very

anxious as she was our first child and no-one in the family had this

before. It took nearly 5 months to find out she had BPES and it did

give us relief that the sydrome had a name so we could research all

about it. Your mum not knowing what it was and hence not being able

to explain to you must have been awful.

>

> On a good note, I agree that when he grows up at least you can

pass on the experience and he will also have your eyes which is

something our daughter will not have. Also, if someone has BPES

there is a 50% chance of passing the gene down to a baby but girls

may also have problems conceiving depending on what type I or II.

>

> I would not change my daughter for the world and I think she is

perfect in every way. As someone else stated at least it is not life

threatening!!

>

> Take care

> Lucy, Hampshire UK

[Guest guest]

;

Thanks for your encouragement and hope. Josiah tries to open his

eyes and look, but not for long. I can't wait for him to be more

visually aware. Right now we are looking for a Ped Ophthals in our

area who might be able to give us a good diagnosis.

Sam

Chantilly, VA

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

wrote:

>

> Sam,

> While i was reading your email it brought tears to my eyes, because

on August 3,2006 i had a beautiful baby girl (samantha) and she was

born with Bleph just like her daddy. The whole time i was pregnant i

told myself that her eyes would be fine that something like that

couldn't happen to my baby, well i was wrong. is also my

first baby and my husband was the only one in his family to have

Bleph so i was suprised when samantha had it too. but now almost 5

months later i can tell you samantha doesn't even know that she has a

problem with her eyes she thinks everything is normal and uses her

eyes all the time she wants to see everything. When she was born she

didn't even open her eyes until after we came home from the hospital

and now she can open them almost halfway. once she started using her

eyes she only stops to sleep! I am telling you this because when we

brought samantha home i wish someone would have told me this instead

i kept wondering if she was ever going to open her eyes? and when she

did start using them i had fear that she would stop using them and

lose her eyesight all togeather and now i know better. If you have ay

questions for someone who is going through raising a baby with BLEPH

at the same time feel free to ask

>

>

>

>

>

______________________________________________________________________

__

> Interested in getting caught up on today's news?

> Click here to checkout USA TODAY Headlines.

> http://track.juno.com/s/lc?

s=198954 & u=http://www.usatoday.com/news/front.htm?csp=24

>

[Guest guest]

>

> Hi Sam,

> Thanks for your post. I have BPES and was the only person in my

family with BPES until my daughter, Paige, was born. I also didn't

know there was a name for it until Paige was born and I found it by

searching on the internet when she was about 2 days old. I realized

that it had to be some kind of syndrome if I was able to pass it down

to her. But I wasn't really shocked when she was born with it. I

remember as soon as I delivered her I asked my husband if she had my

eyes. It was as if all along I knew she would have it. Maybe

mother's intuition???

>

> Anyway, I just want to reassure you that it has actually been a

HUGE blessing to be able to explain to Paige that I have the same

eyes she has. She just turned 3 so I have started introducing the

fact that she will have an operation soon. Because I also had the

same operation, it is especially helpful as I explain that she will

have an operation just like her mommy had. I show her pictures of

what I looked like before my surgery and then tell her that she will

have bigger eyes too. The other day she asked to see the picture of

me with my small eyes. It is so nice because my mom could never do

that for me - she has very big eyes so I definitely couldn't relate -

ha!

>

> The best part of explaining the operation to her was when I lifted

her eyelids up with my fingers to show her what it would be like

after her surgery and she got a huge smile on her face. I think she

will do fine - in fact, I know she will. I will be the one who is

the basket case!

>

> Your wife sounds wonderful and so supportive and I am so thankful

you have her to go through this with. My husband is the same and I

definitely know God put him in my life for a reason!

>

>

> Charlotte, NC

>

>

> blepharophimosis New to BPES Group. Just had our first

Son with BPES.

>

> Josiah was born 1/17/2007. My wife, , and I (Sam) are well at

> home coping with first baby syndrome - lack of sleep, crying,

feeding,

> clothing and more crying.

>

> I've heard of this group because I have BPES. I had had my

surgeries

> at a young age, but never knew what this condition was called until

I

> found this group several years ago. (Actually it never ocurred to

me

> to ask my Optha. I simply assumed it had no name.)

>

> Anyway, now we have little Josiah. I knew that BPES could be passed

> on, and during my wife's pregnancy I kept praying and hoping that

he

> would get my wife's beautiful eyes.

>

> At the hospital my mother came in to see the baby and I asked her

if

> his eyes were like mine when I was born. I only intended to get a

feel

> for whether it was possible that it was not like mine. My mom

seemed

> irritated, and said that it looked fine, then she left the room.

Later

> I found out she left to go and cry. I was the only child out of 4

to

> get BPES and our family does not have a history of it. A mother's

> heart was broken twice.

>

> My wife and I had talked about BPES before we got married. She is a

> gentle yet strong woman. She had said that if our child did get

BPES

> we would get through it together. She also said that because I have

it,

> I would be able to help our child cope with it. (God had prepared

the

> right woman for me!)

>

> Well, anyways, and I are here to learn. We live in Northern

> Virginia, right out side of Washington DC. We want to begin

searching

> for doctors and hospitals.

>

> Thanks for reading.

> Sam and .

>

> Hi Sam & ,

Congratulations on the birth of you baby Boy, when I had my son

Marc 34yrs ago he was the first in the family and the doctors never

gave us a name for it, I can relate to your Mother in August last

year when Alfie our grandson was born with the same eyes it was only

then that we found out what it was called, and this great site. Alfie

is the most contented baby we could have and loved by everyone that

knows him. Marc also has a Little girl aged 2 who has not got

it. good luck in finding doctors I'm sure with this site you will get

lot's of help.

>

June x Warrington (UK)

>

>

>

>

______________________________________________________________________

______________

> We won't tell. Get more on shows you hate to love

> (and love to hate): TV's Guilty Pleasures list.

> http://tv./collections/265

>

[Guest guest]

Your story sounds a lot like mine, my daughter is now 2 1/2 and

wonderful.

But the most exciting part is... I also live in Northern Virginia, in

Loudoun County.

>

> Josiah was born 1/17/2007. My wife, , and I (Sam) are well at

> home coping with first baby syndrome - lack of sleep, crying,

feeding,

> clothing and more crying.

>

> I've heard of this group because I have BPES. I had had my

surgeries

> at a young age, but never knew what this condition was called until

I

> found this group several years ago. (Actually it never ocurred to

me

> to ask my Optha. I simply assumed it had no name.)

>

> Anyway, now we have little Josiah. I knew that BPES could be

passed

> on, and during my wife's pregnancy I kept praying and hoping that

he

> would get my wife's beautiful eyes.

>

> At the hospital my mother came in to see the baby and I asked her

if

> his eyes were like mine when I was born. I only intended to get a

feel

> for whether it was possible that it was not like mine. My mom

seemed

> irritated, and said that it looked fine, then she left the room.

Later

> I found out she left to go and cry. I was the only child out of 4

to

> get BPES and our family does not have a history of it. A mother's

> heart was broken twice.

>

> My wife and I had talked about BPES before we got married. She is

a

> gentle yet strong woman. She had said that if our child did get

BPES

> we would get through it together. She also said that because I have

it,

> I would be able to help our child cope with it. (God had prepared

the

> right woman for me!)

>

> Well, anyways, and I are here to learn. We live in Northern

> Virginia, right out side of Washington DC. We want to begin

searching

> for doctors and hospitals.

>

> Thanks for reading.

> Sam and .

>

[Guest guest]

Beth;

Yes, I've read some of your posts and saw that you are in this area.

We saw Lily's pic, and she looks great!

Can you tell me who your doctor(s) are? And what is your experience with them. Which hospital did Lily have her surgeries? What are the timetables for her surgeries. Is it possible to call you?

I'm sorry for all the questions. (attribute it to new parent enthusiasm)

God Bless

Sam and

On 1/25/07, bethgordon03 <bethgordon03@...> wrote:

Your story sounds a lot like mine, my daughter is now 2 1/2 and wonderful. But the most exciting part is... I also live in Northern Virginia, in Loudoun County.>> Josiah was born 1/17/2007. My wife, , and I (Sam) are well at > home coping with first baby syndrome - lack of sleep, crying, feeding, > clothing and more crying.> > I've heard of this group because I have BPES. I had had my surgeries > at a young age, but never knew what this condition was called until

I > found this group several years ago. (Actually it never ocurred to me > to ask my Optha. I simply assumed it had no name.)> > Anyway, now we have little Josiah. I knew that BPES could be passed > on, and during my wife's pregnancy I kept praying and hoping that he > would get my wife's beautiful eyes.> > At the hospital my mother came in to see the baby and I asked her if > his eyes were like mine when I was born. I only intended to get a feel > for whether it was possible that it was not like mine. My mom seemed > irritated, and said that it looked fine, then she left the room. Later > I found out she left to go and cry. I was the only child out of 4 to > get BPES and our family does not have a history of it. A mother's > heart was broken twice.> > My wife and I had talked about BPES before we got married. She is a > gentle yet strong woman. She had said that if our child did get BPES > we would get through it together. She also said that because I have it, > I would be able to help our child cope with it. (God had prepared the > right woman for me!)> > Well, anyways, and I are here to learn. We live in Northern > Virginia, right out side of Washington DC. We want to begin searching > for doctors and hospitals.

> > Thanks for reading.> Sam and .>

[Guest guest]

Thank you.

Lily's been to Children's Hospital, her doctor is the wonderful

surgeon Dr. Gavaris, in DC and Virgnia. Her opthalmologist is

Dr. Kern in VA and she has also seen Dr. Iliss at s

Hopkins/Wilmer Eye Institute and a great genetics counselor at

Childrens Hospital Center in VA is Dr. Rosenbaum.

Yes, please email me directly at my email address and I will give you

my phone number.

For the longest time I waited to hear from someone like us. You can't

imagine.

Beth

bethgordon03@...

> > >

> > > Josiah was born 1/17/2007. My wife, , and I (Sam) are well

at

> > > home coping with first baby syndrome - lack of sleep, crying,

> > feeding,

> > > clothing and more crying.

> > >

> > > I've heard of this group because I have BPES. I had had my

> > surgeries

> > > at a young age, but never knew what this condition was called

until

> > I

> > > found this group several years ago. (Actually it never ocurred

to

> > me

> > > to ask my Optha. I simply assumed it had no name.)

> > >

> > > Anyway, now we have little Josiah. I knew that BPES could be

> > passed

> > > on, and during my wife's pregnancy I kept praying and hoping

that

> > he

> > > would get my wife's beautiful eyes.

> > >

> > > At the hospital my mother came in to see the baby and I asked

her

> > if

> > > his eyes were like mine when I was born. I only intended to get

a

> > feel

> > > for whether it was possible that it was not like mine. My mom

> > seemed

> > > irritated, and said that it looked fine, then she left the room.

> > Later

> > > I found out she left to go and cry. I was the only child out of

4

> > to

> > > get BPES and our family does not have a history of it. A

mother's

> > > heart was broken twice.

> > >

> > > My wife and I had talked about BPES before we got married. She

is

> > a

> > > gentle yet strong woman. She had said that if our child did get

> > BPES

> > > we would get through it together. She also said that because I

have

> > it,

> > > I would be able to help our child cope with it. (God had

prepared

> > the

> > > right woman for me!)

> > >

> > > Well, anyways, and I are here to learn. We live in

Northern

> > > Virginia, right out side of Washington DC. We want to begin

> > searching

> > > for doctors and hospitals.

> > >

> > > Thanks for reading.

> > > Sam and .

> > >

> >

> >

> >

>

[Guest guest]

Hi Sam my name is Carla and I have 1 child w/ BPES. To give you a little history about myself I have a husband who has bpes along w/ his entire family other than a few that were lucky not to get it.The gene is very dominant in his family. Our first son was born with out it and out second child nna has it. We are now pregnant with our 3rd and I am sure the odds are against us and this baby will have it. I have come to terms with this over the years. I think my most accepting moment was when nna was born she had a lot of issues which she had come through and she is fine. Thank God. There was a little boy next to her who had a problem with the valves in his heart and they were reversed. Humm.. I really needed to sit back and take a look at our "little cosmetic issue" verses this little baby who might not even live past the age of a few weeks old. I am just trying to give you a bright side. I have a bit of advise. If Josiah can absolutely not see at all.

Like his eyes at completely closed then chances are he will need to have his lid lifted temporally. There is eye taping which I was not thrilled about. This is where thet tape the eyes open 24 hours a day. Our daughter's eyes opened more and more as she had gotten older. Our first doctor wanted to do surgery at 6 months old. I was thinking you are crazy. The next 2 doctors have both agreed that 3 years to 3 1/2 is fine and there is no rush. Please make sure you get before and after pictures of other childen they have operated on and make sure the doctor who is an oculoplastic and reconstructive surgeon as well as an ophthalmologist. We have gotten 3 opinions now the only thing I am up against is which surgery will be better the sling surgery or the fasia surgery. They are both good but the sling seems to be less invasive. I hope this information helps. There are doctors in your area that do this surgery . I am sure you will receive a flood of emails

back from the group they are great people. If you need anything please let me know. Best of luck Carla and Jerry Howell bethgordon03 <bethgordon03@...> wrote: Thank you. Lily's been to Children's Hospital, her doctor is the wonderful surgeon Dr. Gavaris, in DC and Virgnia. Her opthalmologist is Dr. Kern in VA and she has also seen Dr. Iliss at s Hopkins/Wilmer Eye Institute and a great genetics counselor at Childrens Hospital Center in VA is

Dr. Rosenbaum. Yes, please email me directly at my email address and I will give you my phone number. For the longest time I waited to hear from someone like us. You can't imagine.Bethbethgordon03 > > >> > > Josiah was born 1/17/2007. My wife, , and I (Sam) are well at> > > home coping with first baby syndrome - lack of sleep, crying,> > feeding,> > > clothing and more crying.> > >> > > I've heard of this group because I have BPES. I had had my> > surgeries> > > at

a young age, but never knew what this condition was called until> > I> > > found this group several years ago. (Actually it never ocurred to> > me> > > to ask my Optha. I simply assumed it had no name.)> > >> > > Anyway, now we have little Josiah. I knew that BPES could be> > passed> > > on, and during my wife's pregnancy I kept praying and hoping that> > he> > > would get my wife's beautiful eyes.> > >> > > At the hospital my mother came in to see the baby and I asked her> > if> > > his eyes were like mine when I was born. I only intended to get a> > feel> > > for whether it was possible that it was not like mine. My mom> > seemed> > > irritated, and said that it looked fine, then she left the room.> > Later> > > I found

out she left to go and cry. I was the only child out of 4> > to> > > get BPES and our family does not have a history of it. A mother's> > > heart was broken twice.> > >> > > My wife and I had talked about BPES before we got married. She is> > a> > > gentle yet strong woman. She had said that if our child did get> > BPES> > > we would get through it together. She also said that because I have> > it,> > > I would be able to help our child cope with it. (God had prepared> > the> > > right woman for me!)> > >> > > Well, anyways, and I are here to learn. We live in Northern> > > Virginia, right out side of Washington DC. We want to begin> > searching> > > for doctors and hospitals.> > >> > > Thanks for

reading.> > > Sam and .> > >> >> > > >>

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