Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Welcome Tamara, I am from New Zealand with Ethan who has BPES. He is the only one in our family to have it and i thought it was very rare until i found this group and the amount of members has me gobsmacked... This group is great .. loads of support and very friendly. Take Care Leah blepharophimosis hallo > hi to all, > my name's Tamara and my daughter and my husband have both BPES. > We live in Italy, Milan, and it was so difficult find someonelse with > this syndrom here that when I discover this website I was really glad. > my daughter is 3 mounth , my husband (who cames from Czech Republik) > is 32. > Reading your furum I find exactly the same feelings of you. > excuse if my english is not so good.. I hope is understandable!! > > Bye to everyone > Tamara > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Hi Tamara Great to hear another person has joined,you will get all the information you need from this group,not to mention a huge support network,for me it great to hear of families in simular situations. My Daughter is 2 and has BPES,our son Bradley who is 10 doesnt,her photos are listed under . Take care bolas1212 <Liath_6@...> wrote: hi to all,my name's Tamara and my daughter and my husband have both BPES.We live in Italy, Milan, and it was so difficult find someonelse with this syndrom here that when I discover this website I was really glad.my daughter is 3 mounth , my husband (who cames from Czech Republik) is 32.Reading your furum I find exactly the same feelings of you.excuse if my english is not so good.. I hope is understandable!!Bye to everyoneTamara How much free photo storage do you get? Store your holiday snaps for FREE with Photos. Get Photos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 Hi, thanks to all for your wonderful support, sometimes thinking you're not alone is absolutely important, expecially for my husband. He discovered his syndrom when Alice was born, than you can understand how he feels. At beginning he won't speak about that, probably he's feelings are confused and a little shokked. Then I explained him he wasn't alone and it depends from nothing and it could be simply happen. I organized a meeting with the other family in Milan I found in this website and he met the daughter of this family. Now things are going better, also he accepted to see your photos here and his feelings are really better.. He told me when in Czech Rep. when he was child many children said to him he was different, and Chinese and the worst thing we think is the same could happen to our Alice. This is really important.. knowing you're not alone and can find a good support, in terms of feelings, information and friends. Thanks from my heart to all and take care Bye Tamy > hi to all, > my name's Tamara and my daughter and my husband have both BPES. > We live in Italy, Milan, and it was so difficult find someonelse with > this syndrom here that when I discover this website I was really glad. > my daughter is 3 mounth , my husband (who cames from Czech Republik) > is 32. > Reading your furum I find exactly the same feelings of you. > excuse if my english is not so good.. I hope is understandable!! > > Bye to everyone > Tamara > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 hi to all today are our pictures in website... Under Alice (From Milan) take care to everyone bye bye Tamy > > hi to all, > > my name's Tamara and my daughter and my husband have both BPES. > > We live in Italy, Milan, and it was so difficult find someonelse > with > > this syndrom here that when I discover this website I was really > glad. > > my daughter is 3 mounth , my husband (who cames from Czech > Republik) > > is 32. > > Reading your furum I find exactly the same feelings of you. > > excuse if my english is not so good.. I hope is understandable!! > > > > Bye to everyone > > Tamara > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 She is so precious, so beautiful, she is going to be just fine. Your husband's eyes look great. > > > hi to all, > > > my name's Tamara and my daughter and my husband have both BPES. > > > We live in Italy, Milan, and it was so difficult find someonelse > > with > > > this syndrom here that when I discover this website I was really > > glad. > > > my daughter is 3 mounth , my husband (who cames from Czech > > Republik) > > > is 32. > > > Reading your furum I find exactly the same feelings of you. > > > excuse if my english is not so good.. I hope is understandable!! > > > > > > Bye to everyone > > > Tamara > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Tamy, She is just adorable!!! What a sweetie. Thank you for sharing. April Eisele, Colorado, USA Wife to Jon Mommy to Mira, Micah & Misha --- Tamara <Liath_6@...> wrote: > hi to all > today are our pictures in website... > Under Alice (From Milan) > take care to everyone > bye bye > Tamy > > > > > > > > > > > > > hi to all, > > > my name's Tamara and my daughter and my husband > have both BPES. > > > We live in Italy, Milan, and it was so difficult > find someonelse > > with > > > this syndrom here that when I discover this > website I was really > > glad. > > > my daughter is 3 mounth , my husband (who cames > from Czech > > Republik) > > > is 32. > > > Reading your furum I find exactly the same > feelings of you. > > > excuse if my english is not so good.. I hope is > understandable!! > > > > > > Bye to everyone > > > Tamara > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi everyone, Just to say that I was in Milan last week and was able to meet Tamy (mother of Alice), and Olga & Francesco, parents to baby Caterina. We had a drink at lively café/bar in central Milan. Milan is a wonderful city. If you get a chance to go there, you will not be disappointed. You will eat a lot - but that is to be expected. " Thanks " to all those people, mothers and fathers who go to the trouble of posting on the site, putting up photos or entering information in the " Database " . It really does help people to get in touch and share information and experiences. Ciao Shireen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 What a sweet sweet picture Tamy! love it, karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Thanks so much, really bye bye to everyone Tamara > > What a sweet sweet picture Tamy! > love it, > karen > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.