Re: Hi from another newbie!

[Guest guest]

Welcome Ann and Catalina,I have 3 boys 2 of which have BPES.....other than bpes they have no other health issues. Their father was the first in his family with it and like I stated past it to two of our boys. Until by boys had it and I researched it their dad never new what it was lol...so finally at age 25 he found out. Our boys are ages 8, 5 and 3....the oldest and the youngest have bpes. This site has given me about 90% of the information on bpes that I know. Its a wonderful site and the people are great. WELCOME in Phx, AZ USASent on the Now Network™ from my Sprint® BlackBerryFrom: "themamacatt" Date: Wed, 27 May 2009 19:18:06 -0000<blepharophimosis >Subject: blepharophimosis Hi from another newbie! Hi everyone! My name is Ann. My youngest daughter Catalina was born with BPES. She is now 22 months old. When she was first born, the doctors at the hospital had no clue what was wrong with her eyes, so they just told us that she had micropthalmia and sent us home. Let me tell you, a word written on a piece of sticky note and internet access are not always a good thing! 2 weeks later, we found out that it was actually BPES. When she was just under 2 months, she had her first surgery. Later that day when I was holding her, she opened her eyes and smiled at me for the first time. LOL I'm kind of a sap, I still cry everytime I think about that day! Now she will be 22 months old on the 3rd. She is doing great! She is extremely smart and very active and social. I never heard of BPES before she was born. Until today, I've never met or heard from anyone else who had it that didn't also have cerebal palsy or downs syndrome. I've always known there were other people out there with it, just haven't had the pleasure of meeting anyone. I just want to say, I'm so happy to have found yall! I'll post pics of Catalina in a few minutes.

[Guest guest]

Thanks for the warm welcome! Catalina is the only one in our family with BPES.

She just recently had the genetics testing done, and that really didn't give us

much info that we didn't already know. Basically they just re-confirmed that it

was BPES. They were the ones however who told me about this group, so something

good did come from it!

>

> Welcome Ann and Catalina,

>

> I have 3 boys 2 of which have BPES.....other than bpes they have no other

health issues. Their father was the first in his family with it and like I

stated past it to two of our boys. Until by boys had it and I researched it

their dad never new what it was lol...so finally at age 25 he found out. Our

boys are ages 8, 5 and 3....the oldest and the youngest have bpes. This site has

given me about 90% of the information on bpes that I know. Its a wonderful site

and the people are great. WELCOME

>

> in Phx, AZ USA

> Sent on the Now Network™ from my Sprint® BlackBerry

>

> blepharophimosis Hi from another newbie!

>

>

> Hi everyone! My name is Ann. My youngest daughter Catalina was born with BPES.

She is now 22 months old. When she was first born, the doctors at the hospital

had no clue what was wrong with her eyes, so they just told us that she had

micropthalmia and sent us home. Let me tell you, a word written on a piece of

sticky note and internet access are not always a good thing!

>

> 2 weeks later, we found out that it was actually BPES. When she was just under

2 months, she had her first surgery. Later that day when I was holding her, she

opened her eyes and smiled at me for the first time. LOL I'm kind of a sap, I

still cry everytime I think about that day!

>

> Now she will be 22 months old on the 3rd. She is doing great! She is extremely

smart and very active and social.

>

> I never heard of BPES before she was born. Until today, I've never met or

heard from anyone else who had it that didn't also have cerebal palsy or downs

syndrome. I've always known there were other people out there with it, just

haven't had the pleasure of meeting anyone. I just want to say, I'm so happy to

have found yall! I'll post pics of Catalina in a few minutes.

>

[Guest guest]

Hi, Welcome... I love this site I found it when Tailynn was about 4mthold and realized this is what she had...She is know 6yrold! She has had 3 surgeries the last one at 15mths old and is doing awesome. Tailynn Is the only one in the family with Bpes ...WELCOME

Dawn-Marie...LasVegas Nevada,

Mommy2My3BeautifulAngels

From: "jessicamichel224@..." <jessicamichel224@...>blepharophimosis Sent: Wednesday, May 27, 2009 12:34:47 PMSubject: Re: blepharophimosis Hi from another newbie!

Welcome Ann and Catalina,I have 3 boys 2 of which have BPES.....other than bpes they have no other health issues. Their father was the first in his family with it and like I stated past it to two of our boys. Until by boys had it and I researched it their dad never new what it was lol...so finally at age 25 he found out. Our boys are ages 8, 5 and 3....the oldest and the youngest have bpes. This site has given me about 90% of the information on bpes that I know. Its a wonderful site and the people are great. WELCOME in Phx, AZ USA

Sent on the Now Network™ from my Sprint® BlackBerry

From: "themamacatt" Date: Wed, 27 May 2009 19:18:06 -0000<blepharophimosis>Subject: blepharophimosis Hi from another newbie!

Hi everyone! My name is Ann. My youngest daughter Catalina was born with BPES. She is now 22 months old. When she was first born, the doctors at the hospital had no clue what was wrong with her eyes, so they just told us that she had micropthalmia and sent us home. Let me tell you, a word written on a piece of sticky note and internet access are not always a good thing! 2 weeks later, we found out that it was actually BPES. When she was just under 2 months, she had her first surgery. Later that day when I was holding her, she opened her eyes and smiled at me for the first time. LOL I'm kind of a sap, I still cry everytime I think about that day!Now she will be 22 months old on the 3rd. She is doing great! She is extremely smart and very active and social. I never heard of BPES before she was born. Until today, I've never met or heard from anyone else who had it that didn't also have cerebal palsy or downs syndrome. I've always

known there were other people out there with it, just haven't had the pleasure of meeting anyone. I just want to say, I'm so happy to have found yall! I'll post pics of Catalina in a few minutes.

[Guest guest]

Hello from all of us, we have lynden who is 11 1/2 yrs old and had his first surgery at 5 weeks old...He is the first and only in our family...glad you found this group and hopefully we can all share our experiences with you Tonikka & ChrisEdmonton Alberta CANADA On 27-May-09, at 1:18 PM, themamacatt wrote:Hi everyone! My name is Ann. My youngest daughter Catalina was born with BPES. She is now 22 months old. When she was first born, the doctors at the hospital had no clue what was wrong with her eyes, so they just told us that she had micropthalmia and sent us home. Let me tell you, a word written on a piece of sticky note and internet access are not always a good thing! 2 weeks later, we found out that it was actually BPES. When she was just under 2 months, she had her first surgery. Later that day when I was holding her, she opened her eyes and smiled at me for the first time. LOL I'm kind of a sap, I still cry everytime I think about that day!Now she will be 22 months old on the 3rd. She is doing great! She is extremely smart and very active and social. I never heard of BPES before she was born. Until today, I've never met or heard from anyone else who had it that didn't also have cerebal palsy or downs syndrome. I've always known there were other people out there with it, just haven't had the pleasure of meeting anyone. I just want to say, I'm so happy to have found yall! I'll post pics of Catalina in a few minutes.