Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Hi everyone, Just posted a new pic and wanted to share with you all. Maree and (mother and daughter w/bleph)came down from the North Island (Tauranga)of NZ, while they were here we got to have the pleasure of meeting with them:) It was very special to finally meet 2 people with blephs, as our 21 mth old son Ethan has this. It was the 1st time any of us had gotten to meet someone with bleph in person! So to Maree, Greg (maree's husband)and , we just want to say how much we appreciate you guys taking time out from your vacation to meet with us:) It was awesome!.... Leanne, , Tyler and Ethan:) Christchurch, NZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Hello Leeanne & family, so now we`re out there!! i`m talking about the photo!! have been going to do that for a while but time prevents...... Thanks anyway, now I won`t have to. Tell me tho` -why is that photo already visible when the others you have to click them open?? Just curious.. To others now - we, myself with BPES, my hubby without BPES & our gorgeous 18yr old daughter Candi with BPES have just been to visit Leeanne & her family. Their little Ethan has BPES. As much as they were keen to see someone else `in the flesh` with BPES, imagine my interest to see another baby other than my daughter with BPES!! We had a lovely visit. While we were there Leeanne got out her camera to take a pic of us with Ethan, & now it is on the photo page!! Its the last one posted. Bye for now Maree In blepharophimosis , " leanne30nz " <tltne@c...> wrote: > > Hi everyone, > > Just posted a new pic and wanted to share with you all. Maree and > (mother and daughter w/bleph)came down from the North Island > (Tauranga)of NZ, while they were here we got to have the pleasure of > meeting with them:) It was very special to finally meet 2 people > with blephs, as our 21 mth old son Ethan has this. It was the 1st > time any of us had gotten to meet someone with bleph in person! > So to Maree, Greg (maree's husband)and , we just want to say > how much we appreciate you guys taking time out from your vacation > to meet with us:) It was awesome!.... > > Leanne, , Tyler and Ethan:) > Christchurch, NZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Hi there, Nice to hear back from you:) The pic is visable as it has not been put into a it's own photo folder, it is the only one, so it is fine like that. Shireen from london put the other pictures into folders as most people had more than one pic and they were taking up to much room, so she downsized them, now each family has there own pic folder:) We were wondering how you and Greg would feel seeing Ethan! Been that you hadn't seen another child other than with bleph:) We thought it would bring back good memories of how gosh darn cute they are ha:) Have you had the trip to see the geneticist yet? If so, how did it go? If not, let us know when you do. When you have time, would you be able to send us some pix of when she was little? Now that we have met in person, we would love to see how her eyes looked before the surgery:) Talk soon Leanne and family:) -- blepharophimosis Re: special visitors:) Hello Leeanne & family, so now we`re out there!! i`m talking about the photo!! have been going to do that for a while but time prevents...... Thanks anyway, now I won`t have to. Tell me tho` -why is that photo already visible when the others you have to click them open?? Just curious.. To others now - we, myself with BPES, my hubby without BPES & our gorgeous 18yr old daughter Candi with BPES have just been to visit Leeanne & her family. Their little Ethan has BPES. As much as they were keen to see someone else `in the flesh` with BPES, imagine my interest to see another baby other than my daughter with BPES!! We had a lovely visit. While we were there Leeanne got out her camera to take a pic of us with Ethan, & now it is on the photo page!! Its the last one posted. Bye for now Maree In blepharophimosis , "leanne30nz" <tltne@c...> wrote: > > Hi everyone, > > Just posted a new pic and wanted to share with you all. Maree and > (mother and daughter w/bleph)came down from the North Island > (Tauranga)of NZ, while they were here we got to have the pleasure of > meeting with them:) It was very special to finally meet 2 people > with blephs, as our 21 mth old son Ethan has this. It was the 1st > time any of us had gotten to meet someone with bleph in person! > So to Maree, Greg (maree's husband)and , we just want to say > how much we appreciate you guys taking time out from your vacation > to meet with us:) It was awesome!.... > > Leanne, , Tyler and Ethan:) > Christchurch, NZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Hi Leeanne, Thanx for explanation about photo. Here`s another question - why do your posts always have an ad over them? Makes them hard to read sometimes.......... Yes, will get some pics together for you. We have just been to see the geneticist today. Very helpful & explained things well. She suggested gets gene tested first & then later for me will be easier. The tests are done in Auckland & maybe results are about 3-4 mths to wait. It is still only for research purposes but the doctor is very confident of the research team & their work. can also be tested for hormone levels & `tracked` over a few cycles to watch her hormone activity. This will give an indication of possible fertility problems. The more information you know the more you can make informed decisions about whne to have children, or what to do if you can`t etc. Of course she is only 18 & not at all wanting to start yet!! They are also doing a study into POF which I have agreed to be part of - if a bit of my blood can help the doctors help other women then I`m all for it!! She also explained that I had a 50% chance of passing the gene on & will have a 50% chance of passing it on - providing she is able to have children. If she doesn`t pass the gene on then the BPES stops with her. That was comforting to know. Also this weekend in Auckland we went to visit , Bob & Family. It was great & little Alyssa is so cute. Once again it was nice to meet another person, even tho a little person!! Her eyse looked good after the surgery I think in July? I also want o tsend some pics of when she younger before surgery as once again I forgot to take some to show!! Well, Leeanne its 2.30 in the morning so I should go to bed. Bye Maree Still looking forward to meeting another adult with BPES........... - -- In blepharophimosis , " leanne costello " <tltne@x> wrote: > Hi there, > > Nice to hear back from you:) The pic is visable as it has not been put into > a it's own photo folder, it is the only one, so it is fine like that. > Shireen from london put the other pictures into folders as most people had > more than one pic and they were taking up to much room, so she downsized > them, now each family has there own pic folder:) > > We were wondering how you and Greg would feel seeing Ethan! Been that you > hadn't seen another child other than with bleph:) We thought it > would bring back good memories of how gosh darn cute they are ha:) > > Have you had the trip to see the geneticist yet? If so, how did it go? If > not, let us know when you do. > > When you have time, would you be able to send us some pix of when > she was little? Now that we have met in person, we would love to see how her > eyes looked before the surgery:) > > Talk soon > > Leanne and family:) > > -- blepharophimosis Re: special visitors:) > > > Hello Leeanne & family, > so now we`re out there!! i`m talking about the photo!! have been > going to do that for a while but time prevents...... Thanks anyway, > now I won`t have to. Tell me tho` -why is that photo already visible > when the others you have to click them open?? Just curious.. > To others now - we, myself with BPES, my hubby without BPES & our > gorgeous 18yr old daughter Candi with BPES have just been to visit > Leeanne & her family. Their little Ethan has BPES. As much as they > were keen to see someone else `in the flesh` with BPES, imagine my > interest to see another baby other than my daughter with BPES!! We > had a lovely visit. While we were there Leeanne got out her camera to > take a pic of us with Ethan, & now it is on the photo page!! Its the > last one posted. > Bye for now > Maree > > In blepharophimosis , " leanne30nz " <tltne@c...> wrote: > > > > Hi everyone, > > > > Just posted a new pic and wanted to share with you all. Maree and > > (mother and daughter w/bleph)came down from the North > Island > > (Tauranga)of NZ, while they were here we got to have the pleasure > of > > meeting with them:) It was very special to finally meet 2 people > > with blephs, as our 21 mth old son Ethan has this. It was the 1st > > time any of us had gotten to meet someone with bleph in person! > > So to Maree, Greg (maree's husband)and , we just want to say > > how much we appreciate you guys taking time out from your vacation > > to meet with us:) It was awesome!.... > > > > Leanne, , Tyler and Ethan:) > > Christchurch, NZ > > > > > > Quote Link to comment Share on other sites More sharing options...
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