Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Sounds like a great idea. I've just finished watching the doco on TV 3 on Albino's. They to had a get together recently (the first of its kind in NZ) which seemed to be a great sucess. I'm sure those of us with BPES could benefit greatly in meeting others with the same condition. We live in Gisborne, but would'nt mind going anywhere we all could agree on. Hopefully all the other kiwi members will be keen too. Regards -----Original Message-----From: bobjnr [mailto:bobjnr@...]Sent: Thursday, 12 August 2094 3:59 p.m.blepharophimosis Subject: blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 My husband and I also just finished watching the programme on Albinos! And said how there should be a documentary on Blephs:) just so others can be familiarised about it!!! My husband said I we should write to 20/20:) We would also be interested in meeting next year, We always say how great it would be to actually meet someone in person with blephs! Talk soon. Leanne and (Christchurch) -- RE: blepharophimosis Us Kiwi's Sounds like a great idea. I've just finished watching the doco on TV 3 on Albino's. They to had a get together recently (the first of its kind in NZ) which seemed to be a great sucess. I'm sure those of us with BPES could benefit greatly in meeting others with the same condition. We live in Gisborne, but would'nt mind going anywhere we all could agree on. Hopefully all the other kiwi members will be keen too. Regards -----Original Message-----From: bobjnr [mailto:bobjnr@...]Sent: Thursday, 12 August 2094 3:59 p.m.blepharophimosis Subject: blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Are you new to the group ? Do you have bleph or a son/daughter with it? I can't remember if I have talked to you or not? I am from Christchurch, and we have a beautiful wee man named Ethan with blephs:) pix as a pumpkin, etc at the site:) -- RE: blepharophimosis Us Kiwi's Sounds like a great idea. I've just finished watching the doco on TV 3 on Albino's. They to had a get together recently (the first of its kind in NZ) which seemed to be a great sucess. I'm sure those of us with BPES could benefit greatly in meeting others with the same condition. We live in Gisborne, but would'nt mind going anywhere we all could agree on. Hopefully all the other kiwi members will be keen too. Regards -----Original Message-----From: bobjnr [mailto:bobjnr@...]Sent: Thursday, 12 August 2094 3:59 p.m.blepharophimosis Subject: blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Good Morning Leanne I joined the group a couple of months ago - so relatively new. Our family has a history of BPES. My brother and I have the condition. We inherited it from our father who inherited it from his mother. Dad had 3 sisters. 2 had BPES and 1 didn't. I have a 6 year daughter Baylee (see photo)who has BPES. Baylee has had 3 major surgeries - starting with a silicon brow lift when she was 3 months old. All op's were done at Waikato Hospital. Dr Ng performed the last couple which have been done in the last 12 months. Baylee is very happy with her appearance now so hopefully not too much more surgery. ANDREW HAMMOND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Hi , your daughter is beautiful! How old is she in the pic? Is it recent? I'm interested in hearing about the 3 surgeries shes had if you wish to share her story. Great to hear that you also have an interest in meeting. My husband Rob and I also watched the Doco last night and found it very interesting. I had too very interesting thoughts after watching. One, that they are called Albinos not, people with Albinoism. They also mentioned that it occurs in about 1 in 18,000 people and is classed as rare. Some have estimated BPES to be about 1 in 200,000 (I think that was your recent estimate Shireen?) They mentioned how allot of people with Albinoism never meet another. I think its great they have finally got together for support etc. I only hope we can achieve the same. RE: blepharophimosis Us Kiwi's Sounds like a great idea. I've just finished watching the doco on TV 3 on Albino's. They to had a get together recently (the first of its kind in NZ) which seemed to be a great sucess. I'm sure those of us with BPES could benefit greatly in meeting others with the same condition. We live in Gisborne, but would'nt mind going anywhere we all could agree on. Hopefully all the other kiwi members will be keen too. Regards -----Original Message-----From: bobjnr [mailto:bobjnr@...]Sent: Thursday, 12 August 2094 3:59 p.m.blepharophimosis Subject: blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Hi The photo of Baylee was taken 2 months ago. 1 month after her 6th birthday. Baylee's first surgery was in Aug 98 (3 months old) she had silicon slings put in her brows to help left the eyelids. Doctors were concerned her eyesight may not develop properly unless the lids were " made " to open wider; hence the big decision to operate at a very young age. After that harrowing experience we travelled from Gisborne to Waikato Hospital every 6 months for regular checks. At 4 Baylee was prescribed glasses as one eye had better vision than the other. On Aug 13 last year Baylee had the " trans-nasal " drilling and wiring operation that helps pull the eyes closer together laterally and also helps form a " bridge " at the top of the nose which Baylee did'nt really have. (quite common with BPES apparently) Then on 28 April this year surgery again. This time tissue was " harvested " from Baylee's right thigh and put into her brow to help lift the lid. We have our next appointment at Waikato in early October to decide what, if anything should be done next. Its amazing how brave and strong kids can be and how quickly they bounce back. I sometimes think its harder on the parents than it is on the kid. Baylee couldn't wait to get back to school and only had one week off with both the last op's. I'll keep the group updated on any developments. Hopefully we can get some more of the kiwi's in the group excited about the " get together " Best Regards Hammond > > From: " bobjnr " <bobjnr@...> > Date: 2004/08/13 Fri AM 11:14:40 GMT+12:00 > <blepharophimosis > > Subject: Re: blepharophimosis Us Kiwi's > > Hi , your daughter is beautiful! How old is she in the pic? Is it recent? > I'm interested in hearing about the 3 surgeries shes had if you wish to share her story. > Great to hear that you also have an interest in meeting. My husband Rob and I also watched the Doco last night and found it very interesting. I had too very interesting thoughts after watching. One, that they are called Albinos not, people with Albinoism. They also mentioned that it occurs in about 1 in 18,000 people and is classed as rare. Some have estimated BPES to be about 1 in 200,000 (I think that was your recent estimate Shireen?) > They mentioned how allot of people with Albinoism never meet another. I think its great they have finally got together for support etc. I only hope we can achieve the same. > > > blepharophimosis Us Kiwi's > > > This is a message for all of us Kiwi's way over here in New Zealand! > > Rob and I are very much interested in meeting with others who have BPES or children with. > > We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. > > We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. > > Please let us know of your interest. > > Regards > > Rob and > (Parents of Alyssa with BPES) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 hi my name is Tonikka and my son is 6 1/2 (Lynden) he has pics on the site. we are from Edmonton Alberta Canada.he was 6 weeks old his 1st surgery then 3 more after. he also had the silicone brow lift 1st but when they did the inner canthus (inner eye corners) I opted not to do the wiring because he said "dr " that it was permanent and if it did not work they would not be able to change it. and that his tear ducts may be ruined. so I opted to just have the inner corners pulled in without the wiring. how did you decide on what procedures to do?? your little girl is really really beautiful by the way. do you have before and after pictures of your little one?? Tonikka Re: blepharophimosis Us Kiwi's> > Hi , your daughter is beautiful! How old is she in the pic? Is it recent?> I'm interested in hearing about the 3 surgeries shes had if you wish to share her story.> Great to hear that you also have an interest in meeting. My husband Rob and I also watched the Doco last night and found it very interesting. I had too very interesting thoughts after watching. One, that they are called Albinos not, people with Albinoism. They also mentioned that it occurs in about 1 in 18,000 people and is classed as rare. Some have estimated BPES to be about 1 in 200,000 (I think that was your recent estimate Shireen?)> They mentioned how allot of people with Albinoism never meet another. I think its great they have finally got together for support etc. I only hope we can achieve the same.> > > blepharophimosis Us Kiwi's> > > This is a message for all of us Kiwi's way over here in New Zealand!> > Rob and I are very much interested in meeting with others who have BPES or children with.> > We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also.> > We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research.> > Please let us know of your interest.> > Regards> > Rob and > (Parents of Alyssa with BPES) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Where is the photo? I would like to see it but can't find it. --- In blepharophimosis , " ANDREW HAMMOND " <squinge@x> wrote: > Good Morning Leanne > > I joined the group a couple of months ago - so relatively new. > Our family has a history of BPES. > My brother and I have the condition. > We inherited it from our father who inherited it from his mother. > Dad had 3 sisters. > 2 had BPES and 1 didn't. > I have a 6 year daughter Baylee (see photo)who has BPES. > Baylee has had 3 major surgeries - starting with a silicon brow lift when > she was 3 months old. > All op's were done at Waikato Hospital. > Dr Ng performed the last couple which have been done in the last 12 > months. > Baylee is very happy with her appearance now so hopefully not too much more > surgery. > > ANDREW HAMMOND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Never mind Hee Hee. > > Good Morning Leanne > > > > I joined the group a couple of months ago - so relatively new. > > Our family has a history of BPES. > > My brother and I have the condition. > > We inherited it from our father who inherited it from his mother. > > Dad had 3 sisters. > > 2 had BPES and 1 didn't. > > I have a 6 year daughter Baylee (see photo)who has BPES. > > Baylee has had 3 major surgeries - starting with a silicon brow > lift when > > she was 3 months old. > > All op's were done at Waikato Hospital. > > Dr Ng performed the last couple which have been done in the > last 12 > > months. > > Baylee is very happy with her appearance now so hopefully not too > much more > > surgery. > > > > ANDREW HAMMOND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 sounds like a good idea... It would be neat to have a get together and I wouldnt mind travelling either... Leah RE: blepharophimosis Us Kiwi's Sounds like a great idea. I've just finished watching the doco on TV 3 on Albino's. They to had a get together recently (the first of its kind in NZ) which seemed to be a great sucess. I'm sure those of us with BPES could benefit greatly in meeting others with the same condition. We live in Gisborne, but would'nt mind going anywhere we all could agree on. Hopefully all the other kiwi members will be keen too. Regards -----Original Message-----From: bobjnr [mailto:bobjnr@...]Sent: Thursday, 12 August 2094 3:59 p.m.blepharophimosis Subject: blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.732 / Virus Database: 486 - Release Date: 29/07/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Hi there, I saw the doco last night about albinos and I thought the same - that it would be great to have a documentary on BPES. I think it would be fantastic for the kiwis to meet up (I'm 36 and have never met another person with BPES...yet). Perhaps us kiwis could have a separate contact group for discussing kiwi stuff - there seems to be a few of us! (other one) --- leah <leahs_male@...> wrote: > sounds like a good idea... It would be neat > to have a get together and I wouldnt mind > travelling either... > > Leah > blepharophimosis Us Kiwi's > > > This is a message for all of us Kiwi's > way over here in New Zealand! > > Rob and I are very much interested in > meeting with others who have BPES or children > with. > > We therefore would like to arrange a BPES > Meeting for sometime in later 2005 and would > like to know how many of you would be > interested in attending. We understand that > this will involve travel for most. We are also > hoping to get the support of some Medical > Personnel to meet with us also. > > We are happy to plan and arrange this but > first need to know if others are interested in > meeting besides just us. We feel this would be > a great opportunity for us and our daughter and > of course a benefit to all who attend including > anyone in research. > > Please let us know of your interest. > > Regards > > Rob and > (Parents of Alyssa with BPES) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Hello, I think thats a great idea. I wouldn't mind meeting other people with BPES. It would be nice to share experiences etc. Rebekah blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Hi I am 24yrs old with BPES, and I too have had all my surgeries at Waikato Hospital. They were all performed by Dr Beehan (retired) and Dr Stuart McNicoll. You could get your doctor to chat with Dr McNicoll about were to go to next. I have a picture posted in the group. It was taken about 4weeks ago, if you want to take a look. I have had a total of 7surgeries Rebekah. RE: blepharophimosis Us Kiwi's Sounds like a great idea. I've just finished watching the doco on TV 3 on Albino's. They to had a get together recently (the first of its kind in NZ) which seemed to be a great sucess. I'm sure those of us with BPES could benefit greatly in meeting others with the same condition. We live in Gisborne, but would'nt mind going anywhere we all could agree on. Hopefully all the other kiwi members will be keen too. Regards -----Original Message-----From: bobjnr [mailto:bobjnr@...]Sent: Thursday, 12 August 2094 3:59 p.m.blepharophimosis Subject: blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Hi Rebekah I'm taking Baylee to Waikato on October 6 and will get Dr Ng to talk to Dr Stuart. I see you live in Taranaki - I guess its about a 5 hour drive for you as well to Waikato. Bummer eh. It looks like the kiwis in the group are spread far and wide around the country. Perhaps people might like to start offering suggestions on a good place to meet up. As it will take a bit of forward planning to get everyone together. Hammond -----Original Message-----From: Rebekah Omelvena [mailto:rebekah.o@...]Sent: Saturday, 14 August 2004 11:36 a.m.blepharophimosis Subject: Re: blepharophimosis Us Kiwi's Hi I am 24yrs old with BPES, and I too have had all my surgeries at Waikato Hospital. They were all performed by Dr Beehan (retired) and Dr Stuart McNicoll. You could get your doctor to chat with Dr McNicoll about were to go to next. I have a picture posted in the group. It was taken about 4weeks ago, if you want to take a look. I have had a total of 7surgeries Rebekah. RE: blepharophimosis Us Kiwi's Sounds like a great idea. I've just finished watching the doco on TV 3 on Albino's. They to had a get together recently (the first of its kind in NZ) which seemed to be a great sucess. I'm sure those of us with BPES could benefit greatly in meeting others with the same condition. We live in Gisborne, but would'nt mind going anywhere we all could agree on. Hopefully all the other kiwi members will be keen too. Regards -----Original Message-----From: bobjnr [mailto:bobjnr@...]Sent: Thursday, 12 August 2094 3:59 p.m.blepharophimosis Subject: blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Hi , yeah I live in Taranaki, but it's only a two hour drive to Waikato. I would have to agree - us kiwis are spread far and wide around the country. Rebekah RE: blepharophimosis Us Kiwi's Sounds like a great idea. I've just finished watching the doco on TV 3 on Albino's. They to had a get together recently (the first of its kind in NZ) which seemed to be a great sucess. I'm sure those of us with BPES could benefit greatly in meeting others with the same condition. We live in Gisborne, but would'nt mind going anywhere we all could agree on. Hopefully all the other kiwi members will be keen too. Regards -----Original Message-----From: bobjnr [mailto:bobjnr@...]Sent: Thursday, 12 August 2094 3:59 p.m.blepharophimosis Subject: blepharophimosis Us Kiwi's This is a message for all of us Kiwi's way over here in New Zealand! Rob and I are very much interested in meeting with others who have BPES or children with. We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. Please let us know of your interest. Regards Rob and (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Taupo is always a good safe bet for meeting up. Half way to most places. --- Rebekah Omelvena <rebekah.o@...> wrote: > Hi , yeah I live in Taranaki, but it's > only a two hour drive to Waikato. I would have > to agree - us kiwis are spread far and wide > around the country. > > Rebekah > blepharophimosis Us Kiwi's > > > This is a message for all of us Kiwi's > way over here in New Zealand! > > Rob and I are very much interested in > meeting with others who have BPES or children > with. > > We therefore would like to arrange a > BPES Meeting for sometime in later 2005 and > would like to know how many of you would be > interested in attending. We understand that > this will involve travel for most. We are also > hoping to get the support of some Medical > Personnel to meet with us also. > > We are happy to plan and arrange this > but first need to know if others are interested > in meeting besides just us. We feel this would > be a great opportunity for us and our daughter > and of course a benefit to all who attend > including anyone in research. > > Please let us know of your interest. > > Regards > > Rob and > (Parents of Alyssa with BPES) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 WOW, Baylee's eyes looks awesome! Brilliant results:), Our son is 18 mths, and will probably have his 1st surgery in 6 mths...then when he is around 4+? I hate using the word *Normal eyes* but Baylee's really do look as if she never had bleph:) -- RE: blepharophimosis Us Kiwi's Good Morning Leanne I joined the group a couple of months ago - so relatively new. Our family has a history of BPES. My brother and I have the condition. We inherited it from our father who inherited it from his mother. Dad had 3 sisters. 2 had BPES and 1 didn't. I have a 6 year daughter Baylee (see photo)who has BPES. Baylee has had 3 major surgeries - starting with a silicon brow lift when she was 3 months old. All op's were done at Waikato Hospital. Dr Ng performed the last couple which have been done in the last 12 months. Baylee is very happy with her appearance now so hopefully not too much more surgery. ANDREW HAMMOND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Hello all especially KIWIS I think it`s a nice idea to meet up at some time & Taupo is quite a central place (except for South Islanders!) My daughter with BPES will be home from Ozzie, for about 2 months, on the 22 OCT 04 (very soon) & hopes to get some surgery donewhile shes here. A bit short notice for a meeting unfortunately but we may be able to see you Leeanne in ChCh as we`ll be downthat way the last week of October. We will have about a week. Bye for now Maree-- In blepharophimosis , " bobjnr " <bobjnr@s...> wrote: > This is a message for all of us Kiwi's way over here in New Zealand! > > Rob and I are very much interested in meeting with others who have BPES or children with. > > We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also. > > We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research. > > Please let us know of your interest. > > Regards > > Rob and > (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Hi I have not been able to see the photo of your daughter Baylee.Is it still there & what is the name of it? I do intend to post some photos of oursevles when I get A ROUND TO-IT! Mareee > Hi Rebekah > > I'm taking Baylee to Waikato on October 6 and will get Dr Ng to talk to Dr > Stuart. > I see you live in Taranaki - I guess its about a 5 hour drive for you as > well to Waikato. Bummer eh. > It looks like the kiwis in the group are spread far and wide around the > country. > Perhaps people might like to start offering suggestions on a good place to > meet up. > As it will take a bit of forward planning to get everyone together. > > Hammond > > > Re: blepharophimosis Us Kiwi's > > > Hi > > I am 24yrs old with BPES, and I too have had all my surgeries at Waikato > Hospital. They were all performed by Dr Beehan (retired) and Dr > Stuart McNicoll. You could get your doctor to chat with Dr McNicoll about > were to go to next. I have a picture posted in the group. It was taken > about 4weeks ago, if you want to take a look. I have had a total of > 7surgeries > > Rebekah. > blepharophimosis Us Kiwi's > > > This is a message for all of us Kiwi's way over here in New Zealand! > > Rob and I are very much interested in meeting with others who have > BPES or children with. > > We therefore would like to arrange a BPES Meeting for sometime in > later 2005 and would like to know how many of you would be interested in > attending. We understand that this will involve travel for most. We are > also hoping to get the support of some Medical Personnel to meet with us > also. > > We are happy to plan and arrange this but first need to know if others > are interested in meeting besides just us. We feel this would be a great > opportunity for us and our daughter and of course a benefit to all who > attend including anyone in research. > > Please let us know of your interest. > > Regards > > Rob and > (Parents of Alyssa with BPES) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hi Maree, Please make sure you come visit, or we can meet anywhere when you come to christchurch!!! We would love to meet you and your daughter:), I can give you my address and ph number, let me know okay...looking forward to it:) Leanne and family. -- blepharophimosis Re: Us Kiwi's Hello all especially KIWISI think it`s a nice idea to meet up at some time & Taupo is quite a central place (except for South Islanders!)My daughter with BPES will be home from Ozzie, for about 2 months, on the 22 OCT 04 (very soon) & hopes to get some surgery donewhile shes here. A bit short notice for a meeting unfortunately but we may be able to see you Leeanne in ChCh as we`ll be downthat way the last week of October. We will have about a week.Bye for nowMaree-- In blepharophimosis , "bobjnr" <bobjnr@s...> wrote:> This is a message for all of us Kiwi's way over here in New Zealand!> > Rob and I are very much interested in meeting with others who have BPES or children with.> > We therefore would like to arrange a BPES Meeting for sometime in later 2005 and would like to know how many of you would be interested in attending. We understand that this will involve travel for most. We are also hoping to get the support of some Medical Personnel to meet with us also.> > We are happy to plan and arrange this but first need to know if others are interested in meeting besides just us. We feel this would be a great opportunity for us and our daughter and of course a benefit to all who attend including anyone in research.> > Please let us know of your interest.> > Regards> > Rob and > (Parents of Alyssa with BPES) Quote Link to comment Share on other sites More sharing options...
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