Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 HI again, I just read this message!!!! Wow you are from NZ as well! I am from Christchurch, what about you?, and our son's have the same name as well! what a coincidence!...There are 2 other members on this support group from NZ, There is Maree and her daughter who have bleph, they live in Waihi Beach near Tauranga, and and Bob, who have a daughter Alyssa with bleph up in Auckland, Have you talked to them yet?....Let me know, and can't wait to talk again soon....bye. Leanne and family:) -- blepharophimosis support needed Hi All..My son Ethan who is nearly 5 was diagnosed with BPES when he was just over 1 year old.. There is very little support here in New Zealand and I know of on;y two people in NZ whose children have the syndrome. I am very keen to correspond with others who are Mums of BPES children. My son had the operation to correct his ptosis at 2.5 years of age and the difference in his outlook is incredible. He is due to start school in a month which i am finding a great challenge as he also has developmental delays and is still unable to be toilet trained due to his low muscle tone.. I have photos of Ethan before and afetr his corrective eye surgery that i would love to share and i look forward to chatting with someone who knows what it is all about. lease contact me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Hi there, Its leanne, Do you have any pix of your Ethan before and after? Would love to see them, especially as he has had surgery, We have pix of Ethan at the site. -- blepharophimosis support needed Hi All..My son Ethan who is nearly 5 was diagnosed with BPES when he was just over 1 year old.. There is very little support here in New Zealand and I know of on;y two people in NZ whose children have the syndrome. I am very keen to correspond with others who are Mums of BPES children. My son had the operation to correct his ptosis at 2.5 years of age and the difference in his outlook is incredible. He is due to start school in a month which i am finding a great challenge as he also has developmental delays and is still unable to be toilet trained due to his low muscle tone.. I have photos of Ethan before and afetr his corrective eye surgery that i would love to share and i look forward to chatting with someone who knows what it is all about. lease contact me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2004 Report Share Posted May 1, 2004 Hi there, Rob and I have a daughter Alyssa with BPES who is 17 Months old, we live in Auckland NZ and Alyssa is soon to have surgery to correct the Epicanthus folds. It is quite exciting to find others in NZ with BPES since we are such a small country. There is a whole family here in Auckland who have generations of BPES but I haven't yet been able to make contact with them. And, of course those of us that have been lucky enough to find this support group. Where abouts are you? blepharophimosis support needed Hi All..My son Ethan who is nearly 5 was diagnosed with BPES when he was just over 1 year old.. There is very little support here in New Zealand and I know of on;y two people in NZ whose children have the syndrome. I am very keen to correspond with others who are Mums of BPES children. My son had the operation to correct his ptosis at 2.5 years of age and the difference in his outlook is incredible. He is due to start school in a month which i am finding a great challenge as he also has developmental delays and is still unable to be toilet trained due to his low muscle tone.. I have photos of Ethan before and afetr his corrective eye surgery that i would love to share and i look forward to chatting with someone who knows what it is all about. lease contact me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Hi ... I am in Hastings and i would very much like to corresspond with you further.. my address is leahs_male@..... I know of one other family in Nz who I have actually met.. their daughter has one eye affected.. she just lives a couple of hours drive away..if you like i will send you photos of Ethan... Take Care.. Contact me soon Leah blepharophimosis support needed Hi All..My son Ethan who is nearly 5 was diagnosed with BPES when he was just over 1 year old.. There is very little support here in New Zealand and I know of on;y two people in NZ whose children have the syndrome. I am very keen to correspond with others who are Mums of BPES children. My son had the operation to correct his ptosis at 2.5 years of age and the difference in his outlook is incredible. He is due to start school in a month which i am finding a great challenge as he also has developmental delays and is still unable to be toilet trained due to his low muscle tone.. I have photos of Ethan before and afetr his corrective eye surgery that i would love to share and i look forward to chatting with someone who knows what it is all about. lease contact me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Hi Leah, great to hear from you. I would love to see your sons pictures Thx. I am curious about the 'daughter' you met with only one eye affected. I didn't know that this was a possibility? Where does she live? I'm guessing they are not a member of this group? You must be very anxious about Ethan starting school soon. Do the Doctors etc say that his other problems are BPES related? Our daughter so far is showing normal development, but it seems to be that the older she gets, the more sensitive she is becoming to bright lights? I'm not sure if this is because of the BPES or just because she is in need of surgery. Has anyone else noticed the same with their young ones? My husband and I will be travelling to Wellington this Summer, we are very anxious to meet with others with BPES. Perhaps closer to the time, we might be able to arrange something to meet with you. blepharophimosis support needed Hi All..My son Ethan who is nearly 5 was diagnosed with BPES when he was just over 1 year old.. There is very little support here in New Zealand and I know of on;y two people in NZ whose children have the syndrome. I am very keen to correspond with others who are Mums of BPES children. My son had the operation to correct his ptosis at 2.5 years of age and the difference in his outlook is incredible. He is due to start school in a month which i am finding a great challenge as he also has developmental delays and is still unable to be toilet trained due to his low muscle tone.. I have photos of Ethan before and afetr his corrective eye surgery that i would love to share and i look forward to chatting with someone who knows what it is all about. lease contact me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Hello Leah & welcome to the group. I live in Waihi, NZ & I found this group by a few months ago & its good to check in with everyone from time to time. My name is Maree, I have BPES - the first in my family. I also have a daughter, who hs BPES & is now 17yrs. She has had 2 lots of surgery & could have more if she chooses to. Will be thinking of you & Ethan as he starts school. I can remember when started (was it really 13yrs ago? Seems like yesterday.....) & I so wanted to protect her from the stares, the commments, the questions etc.......But she coped really well & has become a very individual, strongminded young lady!! Good to be very open with people & children particularly are accepting of differences once they have their curiosity satisfied. Keep in touch with the group - you will find its very supportive & encouraging to be in touch with other parents with BPES children. Bye for now Maree--- In blepharophimosis , leah <leahs_male@c...> wrote: > Hi ... I am in Hastings and i would very much like to corresspond with you further.. my address is leahs_male@c... I know of one other family in Nz who I have actually met.. their daughter has one eye affected.. she just lives a couple of hours drive away..if you like i will send you photos of Ethan... Take Care.. Contact me soon > Leah > blepharophimosis support needed > > > Hi All.. > My son Ethan who is nearly 5 was diagnosed with BPES when he was just > over 1 year old.. There is very little support here in New Zealand > and I know of on;y two people in NZ whose children have the syndrome. > I am very keen to correspond with others who are Mums of BPES > children. My son had the operation to correct his ptosis at 2.5 years > of age and the difference in his outlook is incredible. He is due to > start school in a month which i am finding a great challenge as he > also has developmental delays and is still unable to be toilet > trained due to his low muscle tone.. I have photos of Ethan before > and afetr his corrective eye surgery that i would love to share and i > look forward to chatting with someone who knows what it is all about. > lease contact me > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi .. Please email me..leahs_male@... .nz and i will send you photos of Ethan... blepharophimosis support needed Hi All..My son Ethan who is nearly 5 was diagnosed with BPES when he was just over 1 year old.. There is very little support here in New Zealand and I know of on;y two people in NZ whose children have the syndrome. I am very keen to correspond with others who are Mums of BPES children. My son had the operation to correct his ptosis at 2.5 years of age and the difference in his outlook is incredible. He is due to start school in a month which i am finding a great challenge as he also has developmental delays and is still unable to be toilet trained due to his low muscle tone.. I have photos of Ethan before and afetr his corrective eye surgery that i would love to share and i look forward to chatting with someone who knows what it is all about. lease contact me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Hi Leah, I wondered if you were able to post them on the group photo site for everyone? If you are unhappy to do this, then I would will email you. It's great to see others pic, It makes us feel like there actually is others out their who look like our children/ or ourselves. Its also great to see the before and after surgery pic. Thanks. blepharophimosis support needed Hi All..My son Ethan who is nearly 5 was diagnosed with BPES when he was just over 1 year old.. There is very little support here in New Zealand and I know of on;y two people in NZ whose children have the syndrome. I am very keen to correspond with others who are Mums of BPES children. My son had the operation to correct his ptosis at 2.5 years of age and the difference in his outlook is incredible. He is due to start school in a month which i am finding a great challenge as he also has developmental delays and is still unable to be toilet trained due to his low muscle tone.. I have photos of Ethan before and afetr his corrective eye surgery that i would love to share and i look forward to chatting with someone who knows what it is all about. lease contact me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Lottie: Does that mean we can Tease you like my big Brother teased me through the years? Matt Sent from my iPhone On Sep 7, 2010, at 6:02 PM, " Lottie Duthu " <lotajam@...> wrote: > Thank you everyone for your good wishes. Our support group is like a big brother holding your hand on your first day of school. I didn't fare so well, I ran away and back home to my mother. LOL You have all become a substantial part of my life, sitting at my computer reading your posts, researching and writing. Where would we be without our computers, it would be like the kids without their iPhones. LOL It is not a requirement that we ever send any posts, but if no one did and we all waited for someone else to break the ice, we wouldn't have a support group. There is someone who needs to hear what you have experienced so they will know they are not alone, so please share, lets all use our keyboards to shore some else up. > > Carpe diem, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Lottie, You are in my prayers always. I'm starting to talk alittle more thanks to you and my guardian angel Sue A. Your right we are all in the same boat, and I thank God for bringing you all into my life! My CML family always. Love, Peggy Becker Connected by MOTOBLURâ„¢ on T-Mobile [ ] Support needed Thank you everyone for your good wishes. Our support group is like a big brother holding your hand on your first day of school. I didn't fare so well, I ran away and back home to my mother. LOL You have all become a substantial part of my life, sitting at my computer reading your posts, researching and writing. Where would we be without our computers, it would be like the kids without their iPhones. LOL It is not a requirement that we ever send any posts, but if no one did and we all waited for someone else to break the ice, we wouldn't have a support group. There is someone who needs to hear what you have experienced so they will know they are not alone, so please share, lets all use our keyboards to shore some else up. Carpe diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 Dear Lottie, You say it the best! I'm sorry to hear about your son. I will keep him in my thoughts and prayers. There was a lady from our small town who traveled back n forth to Houston for one year to be treated for mold disease. They had to tear down their old house and build a new. She is free of disease now and living well. I wish the best for your son. God Bless, Jackie From: Lottie Duthu <lotajam@...> Subject: [ ] Support needed " CML " < > Date: Tuesday, September 7, 2010, 5:02 PM  Thank you everyone for your good wishes. Our support group is like a big brother holding your hand on your first day of school. I didn't fare so well, I ran away and back home to my mother. LOL You have all become a substantial part of my life, sitting at my computer reading your posts, researching and writing. Where would we be without our computers, it would be like the kids without their iPhones. LOL It is not a requirement that we ever send any posts, but if no one did and we all waited for someone else to break the ice, we wouldn't have a support group. There is someone who needs to hear what you have experienced so they will know they are not alone, so please share, lets all use our keyboards to shore some else up. Carpe diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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