Guest guest Posted July 27, 2008 Report Share Posted July 27, 2008 Hello my name is rachael and im from southampton england,my son daniel is now 5, his eyes were very small infact tiny when he was born and everybody always said he looked tired. When he was 1 years old my doctor at the time thought he had downsyndrom and i was sent to the hospital with him for all sorts of tests, they took pictures of his eyes ,checked the width of his bridge of his nose etc...they said there was nothing wrong with him ,but he may need alittle surgery later on his eyes...eveything was very vague...but i was never told of this Blepharophimosis...in the last 5 years we have been approached twice by 2 different families asking about our sons condition as there child had blepharophimosis...at the time we just put it too one side, up until last week while on holiday in alcudia a lovely lady called Theresa approached us amazed that there was another child she could meet face to face with the same condition as her daughter..we got talking and she told me about this support group...please help me i have no idea about this at all and no body has told me how i can help my son..he still has not had any operation...i just want him to have the same chances as everybody else in life. we just want to help him...i hope you caN HELP ME ..THANKYOU...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Welcome ! You'll love all the information and support this group gives, they are terrific. It is also a huge relief to know you are not alone. I hope you find the answers you are looking for. I believe there are quite a few members in your part of the world that might direct you to good eye doctors as well as surgeons. Best wishes to you and ! Emalee Barrow From: rachael.grace <rachael.grace@...>Subject: blepharophimosis blepharophimosisblepharophimosis Date: Sunday, July 27, 2008, 3:42 PM Hello my name is rachael and im from southampton england,my son daniel is now 5, his eyes were very small infact tiny when he was born and everybody always said he looked tired. When he was 1 years old my doctor at the time thought he had downsyndrom and i was sent to the hospital with him for all sorts of tests, they took pictures of his eyes ,checked the width of his bridge of his nose etc...they said there was nothing wrong with him ,but he may need alittle surgery later on his eyes...eveything was very vague...but i was never told of this Blepharophimosis. ..in the last 5 years we have been approached twice by 2 different families asking about our sons condition as there child had blepharophimosis. ..at the time we just put it too one side, up until last week while on holiday in alcudia a lovely lady called Theresa approached us amazed that there was another child she could meet face to face with the same condition as her daughter..we got talking and she told me about this support group...please help me i have no idea about this at all and no body has told me how i can help my son..he still has not had any operation... i just want him to have the same chances as everybody else in life. we just want to help him...i hope you caN HELP ME ..THANKYOU.. .. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 > > > > Hello my name is rachael and im from southampton england,my son > daniel > > is now 5, his eyes were very small infact tiny when he was born and > > everybody always said he looked tired. When he was 1 years old my > > doctor at the time thought he had downsyndrom and i was sent to the > > hospital with him for all sorts of tests, they took pictures of > his > > eyes ,checked the width of his bridge of his nose etc...they said > there > > was nothing wrong with him ,but he may need alittle surgery later > on > > his eyes...eveything was very vague...but i was never told of this > > Blepharophimosis...in the last 5 years we have been approached > twice by > > 2 different families asking about our sons condition as there child > had > > blepharophimosis...at the time we just put it too one side, up > until > > last week while on holiday in alcudia a lovely lady called Theresa > > approached us amazed that there was another child she could meet > face > > to face with the same condition as her daughter..we got talking and > she > > told me about this support group...please help me i have no idea > about > > this at all and no body has told me how i can help my son..he still > has > > not had any operation...i just want him to have the same chances as > > everybody else in life. we just want to help him...i hope you caN > HELP > > ME ..THANKYOU...... > > >thankyou for replying,,,went back to the doctors and they showed us a letter that had diagnosed daniel with bleph at 1 yr old..no one told us...we were put under a plastic surgeon at the time but have heard nothing for 4 yrs....the doctor apologised but well....she is going to push for a appointment to see the surgeon...i will keep my fingrs crossed...thanks again..from rachael southamptom.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 Bonsoir Laëticia, je viens de vous envoyer message Bonne soirée, Hervé > > Bonsoir, > Je suis française et atteinte d'un blépharophimosis ainsi que mon fils de 22 mois. Je ne pratique pas du tout l'anglais....est-ce que certain d'entre vous peuvent communiquer en français afin de partager nos expériences sur cette malformation?? > Merci par avance! > Laëtitia > Quote Link to comment Share on other sites More sharing options...
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