Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Hannah, I do not have bpes, however my 10month old daughter does. She had temp slings put in at 3 months. She did have another surgery in January due to infected tissue and the surgery went well. Her appearance is great and most people just think that she looks Asian. I don't notice her being different, but that may be because I am her mother and love her. I would love to know (if it not to hard to talk about) how bpes is difficult for those who have it. This would be helpful for me as my daughter gets older. I want to be understanding and supportive and not think she is over reacting. Please help me to understand so that I can educate my family and others around her prior to her being of age to be affected emotionally. Any help would be appreciated! Nicki --- In blepharophimosis , " h.jameson " <h.jameson@...> wrote: > > hi my name is hannah i am 13 but i feel like my life has change because > of this bpes. so i thought that if people in ny, mass, ri, me could > meet maybe it would make my life a lot easyer. even if it is just one > person from one of those states. Or some other state that is close to > or close new hamsphire. sometime i wish people in my school would under > stand what is like to live with bpes, sometimes i could just cry that > is how hard this hits me. > can you please wright back > from a group member > Hannah j,13 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 hi hannah , first of you i can understand how you feel , i also have bpes and found this site when i was in my twentys. I grew up thinking i was the only one in this world to have this and going through school being called all names but quite funny because people thought i was chinese, i remember going into a chinese takeaway and getting free food ha ha ha . anyway i had my big op in moorfields in london uk when i was sixteen and now i feel normal (whatever that is ) but still get a funny look every so often, i used to wear sun glasses all the time so i do understand how you feel and everyone on this site does hannah , dont worry hannah people will stare even if you have a big nose , but im sure you will alright , trust me , take care scott"h.jameson" <h.jameson@...> wrote: hi my name is hannah i am 13 but i feel like my life has change because of this bpes. so i thought that if people in ny, mass, ri, me could meet maybe it would make my life a lot easyer. even if it is just one person from one of those states. Or some other state that is close to new hamsphire. sometime i wish people in my school would under stand what is like to live with bpes, sometimes i could just cry that is how hard this hits me.can you please wright backfrom a group member Hannah j,13Thank you , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 nicki when she gets older she will get picked on alot an dkids will look at here in th e store and they will stare. i am a very caring person and i love kids. well i really can not answer any question . but my mother can. hannah ps write back Mike and Nicki Venable <nicki.venable@...> wrote: Hannah,I do not have bpes, however my 10month old daughter does. She had temp slings put in at 3 months. She did have another surgery in January due to infected tissue and the surgery went well. Her appearance is great and most people just think that she looks Asian. I don't notice her being different, but that may be because I am her mother and love her. I would love to know (if it not to hard to talk about) how bpes is difficult for those who have it. This would be helpful for me as my daughter gets older. I want to be understanding and supportive and not think she is over reacting. Please help me to understand so that I can educate my family and others around her prior to her being of age to be affected emotionally. Any help would be appreciated!Nicki>> hi my name is hannah i am 13 but i feel like my life has change because > of this bpes. so i thought that if people in ny, mass, ri, me could > meet maybe it would make my life a lot easyer. even if it is just one > person from one of those states. Or some other state that is close to > or close new hamsphire. sometime i wish people in my school would under > stand what is like to live with bpes, sometimes i could just cry that > is how hard this hits me.> can you please wright back> from a group member > Hannah j,13> Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 scott thank you for writing backit really helped hannah SCOTT FILBEY <scottfilbey@...> wrote: hi hannah , first of you i can understand how you feel , i also have bpes and found this site when i was in my twentys. I grew up thinking i was the only one in this world to have this and going through school being called all names but quite funny because people thought i was chinese, i remember going into a chinese takeaway and getting free food ha ha ha . anyway i had my big op in moorfields in london uk when i was sixteen and now i feel normal (whatever that is ) but still get a funny look every so often, i used to wear sun glasses all the time so i do understand how you feel and everyone on this site does hannah , dont worry hannah people will stare even if you have a big nose , but im sure you will alright , trust me , take care scott"h.jameson" <h.jameson > wrote: hi my name is hannah i am 13 but i feel like my life has change because of this bpes. so i thought that if people in ny, mass, ri, me could meet maybe it would make my life a lot easyer. even if it is just one person from one of those states. Or some other state that is close to new hamsphire. sometime i wish people in my school would under stand what is like to live with bpes, sometimes i could just cry that is how hard this hits me.can you please wright backfrom a group member Hannah j,13 Thank you , Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi Hannah. I'm Margot from New Jersey. I'm ten years old. Sorry about the short sentences. Anyway, I only met one girl with our disease (bpes) who was two. We met at Whole Foods the supermarket. I know how you feel. I have glasses, too so whenever I take them off people stare at me. Even adults. I end up telling 3 or 4 kids about my disease a week. It's not such a big deal to explain but when I finish talking about the person shrugs and leaves. As if this disease is no big deal. I hate to say it but my friends don't get it either. Maybe it's hard to understand but I couldn't say it any better. People think I'm chinese or Japanese sometimes. How I handle that I cannot say. I do remember once in Kindergarten I was eating lunch and a kid said I was Indian and started pulling his eyes out to the sides like mine. I simply pushed my eyes in as a dis. Although, now that dis doesn't work. Hannah, I think what we need to do is think of a way to teach people about our disease. It may work. If we wanted we could start a series about it! Well, good luck on finding more people. You can write me back if you want...I'm using my mom's e-mail. It's up on the top of this message. Hope to hear back! Bye, and good luck! ===================== From: <pradding@...> Date: 2007/05/15 Tue PM 07:56:05 CDT " h.jameson " <h.jameson@...>, blepharophimosis Subject: Re: blepharophimosis hi ===================== From: " h.jameson " <h.jameson@...> Date: 2007/05/15 Tue PM 07:56:05 CDT blepharophimosis Subject: blepharophimosis hi hi my name is hannah i am 13 but i feel like my life has change because of this bpes. so i thought that if people in ny, mass, ri, me could meet maybe it would make my life a lot easyer. even if it is just one person from one of those states. Or some other state that is close to new hamsphire. sometime i wish people in my school would under stand what is like to live with bpes, sometimes i could just cry that is how hard this hits me. can you please wright back from a group member Hannah j,13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 I have a 16 year old son that was born with severe bpes. He is a very bright, caring and handsome young man. Throughout his life he has had to explain his differences to different people. Within moments it is not an issue. He only gives a very brief explanation. That is sufficient for most. My son is a high honor student. In grade school he received the academic presidential award. He has played baseball, basketball and football. He is very popular and well liked by both children and adults. I do believe there are some days that he does not even think about bpes. A positive attitude and high self esteem is very important. I continually gave this child positive reinforcement about his looks as well as his mind. I can't stress enough how important this is.He did go through 3 surgeries at Mass Eye in Boston. I am a single Mom and have a son that is 18 months younger that does not have bpes. Janet in NHMike and Nicki Venable <nicki.venable@...> wrote: Hannah,I do not have bpes, however my 10month old daughter does. She had temp slings put in at 3 months. She did have another surgery in January due to infected tissue and the surgery went well. Her appearance is great and most people just think that she looks Asian. I don't notice her being different, but that may be because I am her mother and love her. I would love to know (if it not to hard to talk about) how bpes is difficult for those who have it. This would be helpful for me as my daughter gets older. I want to be understanding and supportive and not think she is over reacting. Please help me to understand so that I can educate my family and others around her prior to her being of age to be affected emotionally. Any help would be appreciated!Nicki>> hi my name is hannah i am 13 but i feel like my life has change because > of this bpes. so i thought that if people in ny, mass, ri, me could > meet maybe it would make my life a lot easyer. even if it is just one > person from one of those states. Or some other state that is close to > or close new hamsphire. sometime i wish people in my school would under > stand what is like to live with bpes, sometimes i could just cry that > is how hard this hits me.> can you please wright back> from a group member > Hannah j,13> Expecting? Get great news right away with email Auto-Check.Try the Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi Hannah, I don't often write on this site these days, however when I read your post, it bought back memories for me, and I just wanted to let you know that you can still have a Happy and 'normal ' life, even with bpes. I'm 31 now, but it doesn't seem that long ago that I was your age, and I got called names such as 'chinkie' and 'slit eyes', which were so hurtful. I remember feeling so miserable, but you have to be strong and remember that kids will pick on anyone who's a bit different, no matter what the difference is. Since then, I've grew up to have a very happy and full life. I'm happily married, have a successful career and my eyes aren't an issue for me any more. In fact, after surgery, I have had so many people compliment me on my looks, things have really changed for me. You can see my pic's under Abbie_gog. Growing up is hard at the best of times, and 13 is a difficult age for many girls. As you get older I'm sure things will get better for you. Try to stay positive and not let people who are mean to you hurt you. I know it's hard, but BPES really doesn't have to ruin your life, I bet there are loads of great things about you that makes people love you, just think about all that stuff and enjoy your teens! Also, it wont be long before you might want to start wearing make up, which believe me, will make a big difference on how you look! Take care Hannah, Abbie in the UK Re: blepharophimosis Re: hi I have a 16 year old son that was born with severe bpes. He is a very bright, caring and handsome young man. Throughout his life he has had to explain his differences to different people. Within moments it is not an issue. He only gives a very brief explanation. That is sufficient for most. My son is a high honor student. In grade school he received the academic presidential award. He has played baseball, basketball and football. He is very popular and well liked by both children and adults. I do believe there are some days that he does not even think about bpes. A positive attitude and high self esteem is very important. I continually gave this child positive reinforcement about his looks as well as his mind. I can't stress enough how important this is.He did go through 3 surgeries at Mass Eye in Boston. I am a single Mom and have a son that is 18 months younger that does not have bpes. Janet in NHMike and Nicki Venable <nicki.venable@ co.allen. in.us> wrote: Hannah,I do not have bpes, however my 10month old daughter does. She had temp slings put in at 3 months. She did have another surgery in January due to infected tissue and the surgery went well. Her appearance is great and most people just think that she looks Asian. I don't notice her being different, but that may be because I am her mother and love her. I would love to know (if it not to hard to talk about) how bpes is difficult for those who have it. This would be helpful for me as my daughter gets older. I want to be understanding and supportive and not think she is over reacting. Please help me to understand so that I can educate my family and others around her prior to her being of age to be affected emotionally. Any help would be appreciated!Nicki>> hi my name is hannah i am 13 but i feel like my life has change because > of this bpes. so i thought that if people in ny, mass, ri, me could > meet maybe it would make my life a lot easyer. even if it is just one > person from one of those states. Or some other state that is close to > or close new hamsphire. sometime i wish people in my school would under > stand what is like to live with bpes, sometimes i could just cry that > is how hard this hits me.> can you please wright back> from a group member > Hannah j,13> Expecting? Get great news right away with email Auto-Check.Try the Beta. Answers - Got a question? Someone out there knows the answer. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 Hi Hannah How are you? I havent read this site in ages and like everyone else when I read your message I just had to let you know you are not alone. I was the same called Chinese but I thought these people were strange because I didn't know what I had. I didn't really understand why they were saying it. I knew I was different. My parents never really discussed it. I don't think my Dad knew what it was either and he has it. I remember a friend in Primary school saying to me one day " My mum said that when you were born you couldn't open your eyes " I just looked at her and said that's not true and anyway what did she know !!! Im 31 now and I have 3 boys 8, 3 and 18mths. My middle son has BPS too and as soon as they were all born I checked their eyes and I cried for days. Sam is 3 now and he gets on great and goes to nursery and I make sure everyone who needs to know is told about his eyes. If any kids ask, I tell them. In the park one child started saying to him " you've got funny eyes " over and over again and I was raging! Sam's brother, Cameron, who is 8 immediately stood up to him. It was great! Sam will have surgery in the summer before he starts school. His brother came down almost crying the other night saying that Sam can do something that he will never be able to do. That is - roll his eyes back until they disappear. This was my party trick at school too. All the kids used to make me do it and they would say " wow, how can you do that " I used to say " it's because of my eyes that I've got " . It sounds ridiculous now because back then I didn't even know what I was talking about. I really hope you get some great friends your age from here and you can chat about how you feel and what experiences you have. As you get older people don't bother you as much about your eyes and are more curious than anything. Plus don't forget make-up works wonders so, learn how to use it when you are ready. You sound like a great person and like I say to my son, life and things are very different when you are an adult, which for you is not long. Take care of you! from Glasgow. --- In blepharophimosis , " h.jameson " <h.jameson@...> wrote: > > hi my name is hannah i am 13 but i feel like my life has change because > of this bpes. so i thought that if people in ny, mass, ri, me could > meet maybe it would make my life a lot easyer. even if it is just one > person from one of those states. Or some other state that is close to > or close new hamsphire. sometime i wish people in my school would under > stand what is like to live with bpes, sometimes i could just cry that > is how hard this hits me. > can you please wright back > from a group member > Hannah j,13 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 Hi , I laughed out loud at your trick. My son who is 18 now, also used that to make his friends jealous. I used to be horrified when he would roll his eyes back, I tried to use the line "If you keeping doing that, one day they will just stay that way." He never believed me....he thought it was the coolest thing. :-) Ontario, Canadadenisecam1 <denisecam1@...> wrote: Hi HannahHow are you?I havent read this site in ages and like everyone else when I readyour message I just had to let you know you are not alone.I was the same called Chinese but I thought these people were strangebecause I didn't know what I had. I didn't really understand why theywere saying it. I knew I was different. My parents never reallydiscussed it. I don't think my Dad knew what it was either and he hasit. I remember a friend in Primary school saying to me one day "Mymum said that when you were born you couldn't open your eyes" I justlooked at her and said that's not true and anyway what did she know!!! Im 31 now and I have 3 boys 8, 3 and 18mths. My middle son has BPStoo and as soon as they were all born I checked their eyes and I criedfor days. Sam is 3 now and he gets on great and goes to nursery and Imake sure everyone who needs to know is told about his eyes. If anykids ask, I tell them. In the park one child started saying to him"you've got funny eyes" over and over again and I was raging! Sam'sbrother, Cameron, who is 8 immediately stood up to him. It was great!Sam will have surgery in the summer before he starts school. His brother came down almost crying the other night saying that Samcan do something that he will never be able to do. That is - roll hiseyes back until they disappear. This was my party trick at schooltoo. All the kids used to make me do it and they would say " wow, howcan you do that" I used to say "it's because of my eyes that I'vegot". It sounds ridiculous now because back then I didn't even knowwhat I was talking about.I really hope you get some great friends your age from here and youcan chat about how you feel and what experiences you have. As you getolder people don't bother you as much about your eyes and are morecurious than anything. Plus don't forget make-up works wonders so, learn how to use it whenyou are ready.You sound like a great person and like I say to my son, life andthings are very different when you are an adult, which for you is notlong. Take care of you! from Glasgow.--- In blepharophimosis , "h.jameson" <h.jameson@...>wrote:>> hi my name is hannah i am 13 but i feel like my life has change because > of this bpes. so i thought that if people in ny, mass, ri, me could > meet maybe it would make my life a lot easyer. even if it is just one > person from one of those states. Or some other state that is close to > or close new hamsphire. sometime i wish people in my school would under > stand what is like to live with bpes, sometimes i could just cry that > is how hard this hits me.> can you please wright back> from a group member > Hannah j,13> Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Yes you made me laugh too as Todd aged 4 thinks this is great way to tease his 2 bigger brothers! Caroline UK > > > > hi my name is hannah i am 13 but i feel like my life has change because > > of this bpes. so i thought that if people in ny, mass, ri, me could > > meet maybe it would make my life a lot easyer. even if it is just one > > person from one of those states. Or some other state that is close to > > or close new hamsphire. sometime i wish people in my school would under > > stand what is like to live with bpes, sometimes i could just cry that > > is how hard this hits me. > > can you please wright back > > from a group member > > Hannah j,13 > > > > > > > > > --------------------------------- > Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Hi Caroline & KatiIm so glad others do it too. Im not sure if it is very good for the eyes - I really dont know. Is it fun and the kids love it at school when Sam does it. I have to say I have not done it in around 15 years when Cameron came down and told me that Sam did it. I certainly did not show him and he asked me if I can you do it too and I said yes. I just laughed.One of his Uncles said the same too him - if you keep doing that the wind will change. Our Sam is the most amazing, funny, gorgeous, strong willed little man. He has loads of friends. When he was born I think I carried him everywhere on my hip until he could walk. (probably almost smothered him with it) His confidence to me is one of the most important things for him and if this helps him and others (however small) to make friends and get on then I think thats great! See you all later Caroline Obbard <cazobbs@...> wrote: Yes you made me laugh too as Todd aged 4 thinks this is great way to tease his 2 bigger brothers! Caroline UK > > > > hi my name is hannah i am 13 but i feel like my life has change because > > of this bpes. so i thought that if people in ny, mass, ri, me could > > meet maybe it would make my life a lot easyer. even if it is just one > > person from one of those states. Or some other state that is close to > > or close new hamsphire. sometime i wish people in my school would under > > stand what is like to live with bpes, sometimes i could just cry that > > is how hard this hits me. > > can you please wright back > > from a group member > > Hannah j,13 > > > > > > > > > --------------------------------- > Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. > Win a BlackBerry device from O2 with . Enter now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 HI HANNAH MY NAME IS APRIL I AM FROM NC I HAVE BPES AS WELL AS MY 5 MONTH OLD DAUGHTER. I REMEMBER HOW HARD THOSE TEEN YEARS WERE FOR ME BEING DIFFERENT AND ALL. THE ONLY THING THAT GOT ME THROUGH IT WAS REMEMBERING GOD MADE ME SPECIAL. I AM ALSO ALREADY CONCERENED ABOUT MY DAUGHTER GETTING PICKED ON. THE THING TO REMEMBER IS THAT EVERYONE GETS PICKED ON SOMETIME IN THEIR LIFE. KIDS ARE CRUEL AND NO MATTER WHAT THEY WILL FIND SOMETHING TO PICK AT YOU ABOUT. HAVE YOU HAD ANY SURGERIES AND IF SO DO YOU RECOMMEND HAVING THEM. I AM TRYING TO DECIDE IF MY DAUGHTER SHOULD HAVE THEM OR NOT. I JUST DON'T WANT TO PUT HER THROUGH A SURGERY THAT DOESN'T HELP. APRIL In blepharophimosis , " Mike and Nicki Venable " <nicki.venable@...> wrote: > > Hannah, > > I do not have bpes, however my 10month old daughter does. She had temp > slings put in at 3 months. She did have another surgery in January due > to infected tissue and the surgery went well. Her appearance is great > and most people just think that she looks Asian. I don't notice her > being different, but that may be because I am her mother and love her. > I would love to know (if it not to hard to talk about) how bpes is > difficult for those who have it. This would be helpful for me as my > daughter gets older. I want to be understanding and supportive and not > think she is over reacting. Please help me to understand so that I can > educate my family and others around her prior to her being of age to be > affected emotionally. Any help would be appreciated! > > Nicki > > > > > > hi my name is hannah i am 13 but i feel like my life has change > because > > of this bpes. so i thought that if people in ny, mass, ri, me could > > meet maybe it would make my life a lot easyer. even if it is just one > > person from one of those states. Or some other state that is close to > > or close new hamsphire. sometime i wish people in my school would > under > > stand what is like to live with bpes, sometimes i could just cry that > > is how hard this hits me. > > can you please wright back > > from a group member > > Hannah j,13 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 Hiya , I've been slowly making my way through the forums, boy there is so much to get through. Hannah's post has me reminising. I HATED school until I hit grade 11 in highschool. I was tormented and teased right up until then. I decided that I was sick to death of it. Changed schools. Found friends more weird than I am, and had my nich within a week. I joined a band with the elder sister of one of the popular boys, which lead to a certain amount of respect. My vocal ability got me by. After school I tried for a modelling career, I got to the finals of one competition. Didn't win, but damn it felt good to be up there with the 'normal' people. Was kinda cool to make it into the newspaper with my husband too. I haven't pursued it any further. It will really make a difference if Hannah can find people who like her for her, or the abilities she has. People who have her gift for looking beyond what she looks like. The friends that can do that will be friends for life. I hope both you and Hannah find a flow that will work. Keep telling her she's beautiful, one day she might just wake up and agree with you. *Big Hugs* Smile, it makes people wonder what you've been up to. Belinda --- In blepharophimosis , <c.jameson@...> wrote: I am Hannah's mom and think that it depends on each individual person and how it affects them. I have been very supportive of Hannah telling her that she is beautiful very often and that she is a very caring individual. She would never dream of hurting another person. I think Hannah might feel that boys don't like her because of her eyes. Alot of older people think she is a wonderful child when they meet her. She volunteers at the veteran's home in our town and they all love her there. But there no one is judging how she looks. People are right saying that kids will pick on anyone who is different, no matter what their differences are. I have worked with the school principal with Hannah being picked on and I don't think it happens as frequently as it did. I know that Hannah will grow up and be happy in her life but being a teen is very hard for her. We are so glad we found this group because I think for her it lets her know that there are other people who look like her and she isn't alone. Sincerely on NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 hey belinda this is hannha christines daughter. i have tryed thinking to me self that i am not different and that does not work because kids alway ask wat happened and make fun of me! hannah ps write back Belinda <shewhomustbekept@...> wrote: Hiya ,I've been slowly making my way through the forums, boy there is so much to get through. Hannah's post has me reminising. I HATED school until I hit grade 11 in highschool.I was tormented and teased right up until then. I decided that I was sick to death of it. Changed schools. Found friends more weird than I am, and had my nich within a week. I joined a band with the elder sister of one of the popular boys, which lead to a certain amount of respect. My vocal ability got me by. After school I tried for a modelling career, I got to the finals of one competition. Didn't win, but damn it felt good to be up there with the 'normal' people. Was kinda cool to make it into the newspaper with my husband too. I haven't pursued it any further.It will really make a difference if Hannah can find people who like her for her, or the abilities she has. People who have her gift for looking beyond what she looks like.The friends that can do that will be friends for life.I hope both you and Hannah find a flow that will work. Keep telling her she's beautiful, one day she might just wake up and agree with you.*Big Hugs* Smile, it makes people wonder what you've been up to.BelindaI am Hannah's mom and think that it depends on each individual person and how it affects them. I have been very supportive of Hannah telling her that she is beautiful very often and that she is a very caring individual. She would never dream of hurting another person. I think Hannah might feel that boys don't like her because of her eyes. Alot of older people think she is a wonderful child when they meet her. She volunteers at the veteran's home in our town and they all love her there. But there no one is judging how she looks. People are right saying that kids will pick on anyone who is different, no matter what their differences are. I have worked with the school principal with Hannah being picked on and I don't think it happens as frequently as it did. I know that Hannah will grow up and be happy in her life but being a teen is very hard for her. We are so glad we found this group because I think for her it lets her know that there are other people who look like her and she isn't alone. Sincerely on NH Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Oh wow, that would be wonderful tp meet up. My husband was the first in his family to have Bleph so we have never met anyone else!! So that sounds great! Where will you guys be visiting? Best wishes, > > We live in New Zealand, but I met my husband in Hawaii (Oahu) 17 years ago! > I see you are in kaneohe Bay:) Our son Ethan C (check our folder of pics > under Ethan C, he is wearing a pumpkin costume as a baby) is now 5 1/2...he > was born with bleph...He is the FIRST in either side of our family to have > this so a big surprise to us:) Our first son Tyler is 9 1/2, he was born in > Hawaii at Kaiser Permanente Hospital and does not have bleph...Ethan has had > no surgeries yet as he adapts very well and just raises his eyebrows to open > his eye's wider:) He has never tilted his head back to see but did get > glasses 1 1/2 years ago for an astigmatism, might I say he looks VERY cute > with them! People say he looks like the wee blonde boy from Jerry Maguire or > the wee guy from Stuart Little:) He will most probably have his first op > when he turns 6 next year...scary for mum and dad mostly:( We are so used to > his beautiful eyes and his angelic face that touching it is very scary...We > moved back here to NZ as this is where I am from 8 years ago and we are > finally coming back to Hawaii this xmas for 1 month!!! Can't wait to show > the boy's Hawaii and have them experience the different lifestyle...Tyler > was 2 years old when we left so he doesn't remember anything about it.. > Perhaps we could meet each other? We have only ever met 2 families with > bleph so its alway's nice to meet other's with the same experiences...You > can e-mail me on tltne@... ....Look forward to talking soon....Aloha > & Kia-Ora... > > leanne and family > NZ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 Glad to be here. Read the 120 year diet and I am working on low cal, nutrient dense foods. Thanks for havong this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 Welcome to the group but scratching my head at your question. Walford's book is available in most public libraries. It is also sold at his website, and almost everywhere else on the web where books are sold. A used copy can probably be bought at Amazon for peanuts. Another cheap books site is: half.com > -------------------- > FROM: karl@... > DATE: Thu, 18 Sep 2008 13:43:53 -0400 > SUBJECT: RE: [ ] Hi > > Hi Everyone Just joined a few days ago and I find the > information made available impressive. Could someone please > send me a link re the 120 year diet. Cheers karl > Quote Link to comment Share on other sites More sharing options...
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