Re: Re: is there any aussies out there??

[Guest guest]

Hi there,

We are from NZ, well I'm the kiwi, my husband is American We also have a 4 year old son with bleph...he is our youngest, our first born son does not have bleph, neither does my husband or I or anyone else in our families! Just one of those things:) He is the light of our lives He is the most loving, gentle, precious child you could ever come across...he lights up a room! He has such a beautiful nature, he's outgoing, HAPPY!!! extremely sociable, sometimes TO sociable:) He has had NO surgery and won't do anytime soon either...he just had his 4 year old checkup and his vision is 20/20! The opthalmologist said it would be our call and cosmetic surgery only if we did anything as he is doing just fine...He had to get glasses 6 months ago as he did have an astigmatism, and I will say since having the glasses we have been a LOT happier, as he doesn't get stared at or commented about hardly anymore:) People see the glasses and stop there, they don't notice his *little eyes* now...He took to wearing them like a champ thankfully, he loves them, and has NEVER tryed not wearing them or taking them off We cannot imagine him having surgery because his face is what makes us melt and what makes him, him:) His face is so perfect and angelic looking the way it is....It would be such a shame to change it, but in saying that, if his sight was ever compromised we wouldn't think twice, you have to do what you have to do We have friends here that we met through the group, and they are from Aussie but living here in NZ, only 30 minutes from us! The mum a has bleph, her 10 year old son, and her 4 year old daughter...plus it runs all through her family:) She said at family reunions the little eyes outdo the big eyes:) Our 4 year old's just clicked and love eachother...It was amazing to have them right here, and be the same age! And after Ethan needed his glasses she took her kids for a check up and her daughter needed glasses as well! So now they both have glasses:) Anyways...You can see pics of our family under Ethan, he is wearing a pumpkin suit as a baby...Talk soon...have you got a pic you could share of your children and yourself? if so my direct e-mail is tltne@... See ya....

leanne and family NZ

-- blepharophimosis Re: is there any aussies out there??

>> Well hello there! Its Machaela here and I havent posted anything for > ages...Our little Jessie is doing well, still waiting to have her > first surgery in December. It is really great to read all your > messages and see so many new members, but I am wondering if there are > any aussies out there..? as we would dearly love to meet up with > someone..anyone!!! with BPES. I notice that there was the UK get > together and I was so wishing I could jump on a plane and be there!!! > but anyway...if there are any aussies out there we would really love > to hear from you....Take care everyone xoxoxo>Hi, It's Sharon & here. We're from Melbourne and have just joined the group about 10 minutes ago. We have two daughers, Jessie 4yrs and Larissa 19 mths, both of who have BPES. I (Chris) also had BPES when I was born. Jessie had her first operation about 12 months ago will be having a second operation very soon.We would like to share our experiences and hear about others experiences as well.

[Guest guest]

Hi again Donna,

We have been very lucky with Ethan, he has never tilted his head back to see, he has always looked straight ahead, he just lifts his eyebrows-forehead...Please let us know how the surgery goes.... Have you got pics posted at the site before surgery? Look forward to seeing the after pics as well, take care:)

Leanne and family NZ

-- blepharophimosis Re: is there any aussies out there??

We cannot imagine him having surgery because his face is what makes us melt and what makes him, him:) His face is so perfect and angelic looking the way it is....It would be such a shame to change it, I feel the same way about my daughter's sweet face. She is so beautiful, and her little eyes are just precious. Unfortunately, NOT having surgery is not an option for us. In addition to the blepharophimosis, she also has congenital epiblepharon (her bottom lashes roll in and rub against her eyes) which makes her eyes itch and hurt all the time. It also makes her very sensitive to light. Her ptosis is so sever that she has to tilt her head back to see. So, she definitely has to have surgery. It is scheduled for Friday. In addition to the usual worries about an operation, I'm really concerned about how this is going to change her appearance. She's so beautiful just the way she is. Sigh. We are going Tuesday to have some professional pictures taken – the last of her little face in its natural state. Boy, emotionally, I'm just all over the place – worried, sad, and at the same time, thrilled to think that her life is about to get so much easier! By this time next week, she will be able to see and for the first time in her life, she won't have eyelashes rubbing her eyes! I have a feeling the next 4 days are going to be very, very long!Donnahttp://www.everything-elizabeth.blogspot.com

[Guest guest]

Hi Donna,

I just wanted to wish you all the best with your daughter's surgery.

When my son was born I used to wish he could have his surgery sooner so we

could 'fix' his eyes, but over the past 22 months we have grown to love his

little face just the way it is. Hayden's surgery is still have about a year

and a half away so I will continue to enjoy his sweet face till then.

I think it's great that you are having those last pictures taken. Your

daughter will know when she grows up that you really did love her just the

way she was! What a great gift to give any child - unconditional love!

I hope all goes well for your little girl and much strength as you wait

through the surgery and the recovery process.

Sheryl Kampen

Burlington, ON

Canada

>From: " donnat65 " <donnat65@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis Re: is there any aussies out there??

>Date: Sun, 03 Jun 2007 16:50:24 -0000

>

>--- In blepharophimosis , " costellos " <tltne@...>

>wrote:

>We cannot imagine him having surgery because his face is what makes

>us melt and what makes him, him:) His face is so perfect and angelic

>looking the way it is....It would be such a shame to change it,

>

>

>

>

>

>I feel the same way about my daughter's sweet face. She is so

>beautiful, and her little eyes are just precious. Unfortunately,

>NOT having surgery is not an option for us. In addition to the

>blepharophimosis, she also has congenital epiblepharon (her bottom

>lashes roll in and rub against her eyes) which makes her eyes itch

>and hurt all the time. It also makes her very sensitive to light.

>Her ptosis is so sever that she has to tilt her head back to see.

>So, she definitely has to have surgery. It is scheduled for

>Friday. In addition to the usual worries about an operation, I'm

>really concerned about how this is going to change her appearance.

>She's so beautiful just the way she is. Sigh. We are going Tuesday

>to have some professional pictures taken – the last of her little

>face in its natural state. Boy, emotionally, I'm just all over the

>place – worried, sad, and at the same time, thrilled to think that

>her life is about to get so much easier! By this time next week,

>she will be able to see and for the first time in her life, she

>won't have eyelashes rubbing her eyes!

>

>I have a feeling the next 4 days are going to be very, very long!

>

>Donna

>http://www.everything-elizabeth.blogspot.com

>

>

>

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[Guest guest]

Hi Nicki,

Antonia had her epicathal folds/Canthoplasty surgery done back in April.

As yet she doesnt need Ptosis or slings, so we'll wait to see how things progress.

,

Brisbane, Aust

blepharophimosis Re: is there any aussies out there??

,What type of surgery did your daughter have...folds? ?? My daughter had temp. slings at 3 months.Nicki Venable> > Well hello there! Its Machaela here and I havent posted anything for > > ages...Our little Jessie is doing well, still waiting to have her > > first surgery in December. It is really great to read all your > > messages and see so many new members, but I am wondering if there are > > any aussies out there..? as we would dearly love to meet up with > > someone..anyone! !! with BPES. I

notice that there was the UK get > > together and I was so wishing I could jump on a plane and be there!!! > > but anyway...if there are any aussies out there we would really love > > to hear from you....Take care everyone xoxoxo> > > > > > > > > > How would you spend $50,000 to create a more sustainable environment in Australia? Go to 7 Answers and share your idea. > > > > ____________ _________ _________ _________ _________ _________ _____________ _> How would you spend $50,000 to create a more sustainable environment in Australia? Go to 7 Answers and share your idea.> http://advision. webevents. / aunz/lifestyle/

answers/y7ans-babp_reg.html>

How would you spend $50,000 to create a more sustainable environment in Australia? Go to 7 Answers and share your idea.

[Guest guest]

Hello Belinda,

Maree here from NZ. Welcome to the group - I`m not looking at the posts

often these days. I have a daughter age 20 with BPES - she got from her

mum - she lives south of Cairns but sometimes goes to the Gold Coast to see

fiances family. She has never met someone her age with BPES. Maybe she could

contact you next time she`s down?? Not onthe `net yet.

Maree G

blepharophimosis Re: is there any aussies out there??

> Hiya all. I'm Belinda in Brisbane. I have BPES. I'll be 25 in November.

> I'd have to ask my mum what surgeries I've had. I know I had two ops

> but I was pretty young, so I don't remember much.

> BPES runs in my family, my dad's side, my 5 yearold daughter hasn't got

> BPES.

> Not sure what else to post, but I'm glad I found the group. It's nice

> to know you're not alone.

>

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>

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