Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hello Stina, My name is and I am from Canada, but I was born in Finland, so we are like neighbours. I am the first in my family to have BPES. I have one brother and one sister who don't have it. I am also very close to my siblings. I have one son, Tyler, who has BPES also. My husband and I have tried everything in our power to have more children, but unfortunately we cannot. I would give anything in the world to have been able to have had more children, and to give siblings to my son. So, in my opinion anyway, I would not hold back having more children because of the BPES. There are so many worse things, and there is a 50/50 chance that your next child will NOT have it. Consider yourself very lucky to have the option for more children since so many of us do not. Hope this helps with your decision. Stina Lasu <stina_ls@...> wrote: Stina Lasu <stina_ls@...> wrote: I you might know by now my name is Stina and I'm new to this group. I have blepharophimosis. My father has it (and his mother had it), my brother and my sister and also my baby, Alice, who is 3 months old. I have always wanted to have more than just one child. I have always loved my brother and sister and want to give Alice siblings. I'm so close to my brother and sister and want to give Alice the same opportunity in her life. I guess that the probability that my childern will be born with bleph. most be rather high... Do you think that it is wrong to have more children, knowing that I probably will pass on belph. to them? I really want Alice to have a brother or sister. Personally, I think that you can have a wonderful life despite the bleph. How do you think and feel about this? Those of you with bleph. are you planning to have several childern? I sincerely hope that noone gets oppendend by this question. I guess it is my own insecurity that makes me want to hear your opinions. I just recently found out about bleph. and had a big chock. It is wonderful to get in contact with others about this rare syndrom. Greetings from Stina and Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Stina, There is still that 50/50 chance that you may not pass it on! And even if you did, it is that part of you in your child that will be extra beautiful, it isn't like it is something life threatening or anything, when you look at it, it is just small eyelids, seems so little compared to what some people have to cope with! My husband and I don't have bleph, Ethan was the 1st in the family to have this, even after having our 1st son, who was born with the BIGGEST blue eyes ever, This wouldn't ever be a deciding factor to not have another baby....at the moment 2 very busy boys are enough for us:)...would love that wee girl though:) but another boy would be awesome too! So I would definately say to have another child if thats what you want, you are very blessed to be able to have children...use it to your advantage:) Leanne:) -- blepharophimosis About siblings Stina Lasu <stina_ls@...> wrote: I you might know by now my name is Stina and I'm new to this group. I have blepharophimosis. My father has it (and his mother had it), my brother and my sister and also my baby, Alice, who is 3 months old. I have always wanted to have more than just one child. I have always loved my brother and sister and want to give Alice siblings. I'm so close to my brother and sister and want to give Alice the same opportunity in her life. I guess that the probability that my childern will be born with bleph. most be rather high... Do you think that it is wrong to have more children, knowing that I probably will pass on belph. to them? I really want Alice to have a brother or sister. Personally, I think that you can have a wonderful life despite the bleph. How do you think and feel about this? Those of you with bleph. are you planning to have several childern? I sincerely hope that noone gets oppendend by this question. I guess it is my own insecurity that makes me want to hear your opinions. I just recently found out about bleph. and had a big chock. It is wonderful to get in contact with others about this rare syndrom. Greetings from Stina and Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 hi Stina, Welcome to the group. I was in the same situation as you are now when I had my daughter. My father and 2 older sisters have bleph. I have it too and passed it onto my daughter who will be 7 months next week. I am the only one in my family that passed it onto my child. This being the case, having another child was very discouraging. but I use my mother's situation as inspiration. After having 2 daughters with bleph, it didn't stop her from having 2 more daughters. Bleph is nothing. It is not a disease. It is not a life threatening disorder. What it is, is just small eyes. That's it. Be glad that you can have children as there are others who cannot. Be glad that you can provide your child a sibling to enjoy as you have enjoyed yours. So as for me, I've decided to have another child...maybe in about couple of years. Just as long as my child is born healthy, I don't care if he/she has bleph. Hope this helped.. Min > > I you might know by now my name is Stina and I'm new to this group. I have blepharophimosis. My father has it (and his mother had it), my brother and my sister and also my baby, Alice, who is 3 months old. > > I have always wanted to have more than just one child. I have always loved my brother and sister and want to give Alice siblings. I'm so close to my brother and sister and want to give Alice the same opportunity in her life. I guess that the probability that my childern will be born with bleph. most be rather high... > > Do you think that it is wrong to have more children, knowing that I probably will pass on belph. to them? I really want Alice to have a brother or sister. Personally, I think that you can have a wonderful life despite the bleph. > > How do you think and feel about this? Those of you with bleph. are you planning to have several childern? > > I sincerely hope that noone gets oppendend by this question. I guess it is my own insecurity that makes me want to hear your opinions. I just recently found out about bleph. and had a big chock. It is wonderful to get in contact with others about this rare syndrom. > > Greetings from Stina and Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 hi stina my name is kerry and my husband and daughter both have bleph we thought long and hard about having another child but we would not have it any other way we had a healthy baby boy last year and he does not have bleph and we are thinking about a third its a 50 50 chance for us but we are not to worried as long as our children are healthy. My husbands uncle has 6 children with his wife and only one of their children has bleph. kerry Stina Lasu <stina_ls@...> wrote: Stina Lasu <stina_ls@...> wrote: I you might know by now my name is Stina and I'm new to this group. I have blepharophimosis. My father has it (and his mother had it), my brother and my sister and also my baby, Alice, who is 3 months old. I have always wanted to have more than just one child. I have always loved my brother and sister and want to give Alice siblings. I'm so close to my brother and sister and want to give Alice the same opportunity in her life. I guess that the probability that my childern will be born with bleph. most be rather high... Do you think that it is wrong to have more children, knowing that I probably will pass on belph. to them? I really want Alice to have a brother or sister. Personally, I think that you can have a wonderful life despite the bleph. How do you think and feel about this? Those of you with bleph. are you planning to have several childern? I sincerely hope that noone gets oppendend by this question. I guess it is my own insecurity that makes me want to hear your opinions. I just recently found out about bleph. and had a big chock. It is wonderful to get in contact with others about this rare syndrom. Greetings from Stina and Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hi Stina, My name is Maree & I have BPES as does my only child, a beautiful daughter, now 18 years old. I was the only one in my family with it, even though I have 5 brothers & one sister! Just lucky I guess....... I think you shouldn`t let the fear of passing on BPES to your children, stop you from having any more. Lots of love more than makes up for any difficulties they may experience. We wanted to have more babies after was born but I think I had the dreaded POF! I also had a very suportive family even though as a child it was never really talked about. I have just asked her what she thinks about your concerns & she says - if you are able to have more children & you want to then GO FOR IT!! She is very glad she was born!! Nice to have you part of the group & hope to see some photos of Alice. Maree > > I you might know by now my name is Stina and I'm new to this group. I have blepharophimosis. My father has it (and his mother had it), my brother and my sister and also my baby, Alice, who is 3 months old. > > I have always wanted to have more than just one child. I have always loved my brother and sister and want to give Alice siblings. I'm so close to my brother and sister and want to give Alice the same opportunity in her life. I guess that the probability that my childern will be born with bleph. most be rather high... > > Do you think that it is wrong to have more children, knowing that I probably will pass on belph. to them? I really want Alice to have a brother or sister. Personally, I think that you can have a wonderful life despite the bleph. > > How do you think and feel about this? Those of you with bleph. are you planning to have several childern? > > I sincerely hope that noone gets oppendend by this question. I guess it is my own insecurity that makes me want to hear your opinions. I just recently found out about bleph. and had a big chock. It is wonderful to get in contact with others about this rare syndrom. > > Greetings from Stina and Alice Quote Link to comment Share on other sites More sharing options...
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