BPES 45 years ago, 3 children with BPES and 1 without BPES- IT wil be ok

[Guest guest]

For all parents and others in this group it's been a great 45 years.

When I was diagnosed there was no technology I was one of the first

at a children's hospital to have this surgery. It was crude

reflecting the technology of the times. Today there are so many

great surgeons who do an awesome job with BPES patients. I'm a pro

I've been through 6 surgeries with my children and it's funny I

cried through everyone, they were the tough ones dad was just a cry

baby.

For all of you that are new managing BPES it's not as bad as it

might look, do your children a big favor don't focus on this issue,

and I did say issue because it's not a problem it's an issue like

many others that come and go. My focus is on the child not their

eyes and when they tell you someone is teasing tell them (their just

jealous that your so good looking) and give them a big hug. I have

found reinforcement from you is the key to succefully raising a

child with BPES, if he or she is always you're most handsome or

beautiful person they know there's nothing their peer can say that

will hurt.

Every child is different one child might do fine with just the 1

surgery and the other might need 2, don't worry, some doctors say

the earlier the better it differs.

I chose to get the last 2 in early they did better at an early age;

my oldest had 3 surgeries at 3, talk with your doctor. Love your

kids and don't worry its ok

I have 4 brothers, 2 nephews, 3 children 1 Dad and 1 niece with BPES

I know what I'm talking about...

You can post or email me I will help you any way I can.

[Guest guest]

Thank you so much for your wonderful post. My mom and dad keep

telling me exactly what you just said. I have BPES and my daughter

(18 mos) has it, too. What you said isn't just good parenting for a

kid with BPES, it's just good parenting. I am a teacher and there is

something beautiful and special about all kids, but they all also get

teased about something or other, too.

Thank you, thank you, again.

Beth age 35

Lily age 18 mos

My dad age 63

--- In blepharophimosis , " foxl202 " <foxl202@...>

wrote:

>

> For all parents and others in this group it's been a great 45

years.

> When I was diagnosed there was no technology I was one of the first

> at a children's hospital to have this surgery. It was crude

> reflecting the technology of the times. Today there are so many

> great surgeons who do an awesome job with BPES patients. I'm a pro

> I've been through 6 surgeries with my children and it's funny I

> cried through everyone, they were the tough ones dad was just a cry

> baby.

> For all of you that are new managing BPES it's not as bad as it

> might look, do your children a big favor don't focus on this issue,

> and I did say issue because it's not a problem it's an issue like

> many others that come and go. My focus is on the child not their

> eyes and when they tell you someone is teasing tell them (their

just

> jealous that your so good looking) and give them a big hug. I have

> found reinforcement from you is the key to succefully raising a

> child with BPES, if he or she is always you're most handsome or

> beautiful person they know there's nothing their peer can say that

> will hurt.

> Every child is different one child might do fine with just the 1

> surgery and the other might need 2, don't worry, some doctors say

> the earlier the better it differs.

> I chose to get the last 2 in early they did better at an early age;

> my oldest had 3 surgeries at 3, talk with your doctor. Love your

> kids and don't worry its ok

>

> I have 4 brothers, 2 nephews, 3 children 1 Dad and 1 niece with BPES

> I know what I'm talking about...

> You can post or email me I will help you any way I can.

>

[Guest guest]

Great words of encouragement, thanks! And to Jeroen and Berengere & Johan, Jens and Audrey look great! Thanks for sharing the photos. I am not looking forward to Paige's surgeries but having pictures of such fantastic results from everyone helps tremendously. foxl202 <foxl202@...> wrote: For all parents and others in this group it's been a great 45 years. When I was diagnosed there was no technology I was one of the first at a children's hospital to have this surgery. It was crude reflecting the technology of the times. Today there are so many great surgeons who do an awesome job with BPES patients. I'm a pro I've been through 6 surgeries with my children and it's funny I cried through everyone, they were the tough

ones dad was just a cry baby.For all of you that are new managing BPES it's not as bad as it might look, do your children a big favor don't focus on this issue, and I did say issue because it's not a problem it's an issue like many others that come and go. My focus is on the child not their eyes and when they tell you someone is teasing tell them (their just jealous that your so good looking) and give them a big hug. I have found reinforcement from you is the key to succefully raising a child with BPES, if he or she is always you're most handsome or beautiful person they know there's nothing their peer can say that will hurt. Every child is different one child might do fine with just the 1 surgery and the other might need 2, don't worry, some doctors say the earlier the better it differs.I chose to get the last 2 in early they did better at an early age; my oldest had 3 surgeries at 3, talk with your doctor.

Love your kids and don't worry its okI have 4 brothers, 2 nephews, 3 children 1 Dad and 1 niece with BPESI know what I'm talking about...You can post or email me I will help you any way I can.

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

-Thank you so much for the encouragement, I had no idea what BPES

was until my daughter, Emma, was diagnosed with it. My fears have

been when she starts school next year and how the other kids will

tease her but you are right as long as she has the support at home

it doesn't really matter what the other children say. Thanks again

for the e-mail and words of encouragement.

-- In blepharophimosis , " foxl202 " <foxl202@...>

wrote:

>

> For all parents and others in this group it's been a great 45

years.

> When I was diagnosed there was no technology I was one of the

first

> at a children's hospital to have this surgery. It was crude

> reflecting the technology of the times. Today there are so many

> great surgeons who do an awesome job with BPES patients. I'm a pro

> I've been through 6 surgeries with my children and it's funny I

> cried through everyone, they were the tough ones dad was just a

cry

> baby.

> For all of you that are new managing BPES it's not as bad as it

> might look, do your children a big favor don't focus on this

issue,

> and I did say issue because it's not a problem it's an issue like

> many others that come and go. My focus is on the child not their

> eyes and when they tell you someone is teasing tell them (their

just

> jealous that your so good looking) and give them a big hug. I

have

> found reinforcement from you is the key to succefully raising a

> child with BPES, if he or she is always you're most handsome or

> beautiful person they know there's nothing their peer can say that

> will hurt.

> Every child is different one child might do fine with just the 1

> surgery and the other might need 2, don't worry, some doctors say

> the earlier the better it differs.

> I chose to get the last 2 in early they did better at an early

age;

> my oldest had 3 surgeries at 3, talk with your doctor. Love your

> kids and don't worry its ok

>

> I have 4 brothers, 2 nephews, 3 children 1 Dad and 1 niece with

BPES

> I know what I'm talking about...

> You can post or email me I will help you any way I can.

>

[Guest guest]

I totaly agree that it's important not to make a big deal out of it.

I am the first in my family with BPES. Of course at first my parents

were worried about what the future would bring. However when

children made comments on my eyes my parents always told me: just

tell them you were born with small eyes. I was never ever really

teased but of course children sometimes say mean things. This is

also the case when you have big ears, big teeth or red hair. I think

it's important to teach your children that people can be trusted and

not protect them to much. Some people will say mean things, but

that's just the way it is. Being convinced that people can be

trusted and not thinking that you have to watch out because people

are mean, gives more protection against teasing then being a stud

does.

Jeroen

--- In blepharophimosis , " foxl202 " <foxl202@...>

wrote:

>

> For all parents and others in this group it's been a great 45

years.

> When I was diagnosed there was no technology I was one of the

first

> at a children's hospital to have this surgery. It was crude

> reflecting the technology of the times. Today there are so many

> great surgeons who do an awesome job with BPES patients. I'm a pro

> I've been through 6 surgeries with my children and it's funny I

> cried through everyone, they were the tough ones dad was just a

cry

> baby.

> For all of you that are new managing BPES it's not as bad as it

> might look, do your children a big favor don't focus on this

issue,

> and I did say issue because it's not a problem it's an issue like

> many others that come and go. My focus is on the child not their

> eyes and when they tell you someone is teasing tell them (their

just

> jealous that your so good looking) and give them a big hug. I

have

> found reinforcement from you is the key to succefully raising a

> child with BPES, if he or she is always you're most handsome or

> beautiful person they know there's nothing their peer can say that

> will hurt.

> Every child is different one child might do fine with just the 1

> surgery and the other might need 2, don't worry, some doctors say

> the earlier the better it differs.

> I chose to get the last 2 in early they did better at an early

age;

> my oldest had 3 surgeries at 3, talk with your doctor. Love your

> kids and don't worry its ok

>

> I have 4 brothers, 2 nephews, 3 children 1 Dad and 1 niece with

BPES

> I know what I'm talking about...

> You can post or email me I will help you any way I can.

>

[Guest guest]

Thanks for the thanks man, are you still the only one in your family with BPES. sounds like you managed to deal with the dummies, if i had a dollar for every time i was asked about my eyes i would be rich... Thanks

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

I'm not the first anymore. I Have a four year old son who has it. My

youngest son is not affected.

Jeroen (30)

>

>

> Thanks for the thanks man, are you still the only one in your

family with BPES.

> sounds like you managed to deal with the dummies, if i had a

dollar for every time i was asked about my eyes i would be rich...

>

> Thanks

>

>

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

> Relax. virus scanning helps detect nasty viruses!

>

[Guest guest]

FANTASTIC!!!! WELL SAID!! Lets keep reinforcing this message till the 'cows come home', this is excellently put and from someone who has so much experience of BPES. Thank you for your confidence. Clare and Emy Hertfordshire, UKfoxl202 <foxl202@...> wrote: For all parents and others in this group it's been a great 45 years. When I was diagnosed there was no technology I was one of the first at a children's hospital to have this surgery. It was crude reflecting the technology of the times. Today there are so many great surgeons who do an awesome job with BPES patients. I'm a pro I've been through 6 surgeries with my children and it's funny I cried through everyone, they were the tough ones dad was just a cry baby.For all of you that are

new managing BPES it's not as bad as it might look, do your children a big favor don't focus on this issue, and I did say issue because it's not a problem it's an issue like many others that come and go. My focus is on the child not their eyes and when they tell you someone is teasing tell them (their just jealous that your so good looking) and give them a big hug. I have found reinforcement from you is the key to succefully raising a child with BPES, if he or she is always you're most handsome or beautiful person they know there's nothing their peer can say that will hurt. Every child is different one child might do fine with just the 1 surgery and the other might need 2, don't worry, some doctors say the earlier the better it differs.I chose to get the last 2 in early they did better at an early age; my oldest had 3 surgeries at 3, talk with your doctor. Love your kids and don't worry its okI have 4

brothers, 2 nephews, 3 children 1 Dad and 1 niece with BPESI know what I'm talking about...You can post or email me I will help you any way I can.

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