Re: New and how I found this group

[Guest guest]

Hi Ann

I am from the UK, so am unfamiliar with healthcare finance in

the USA. I was going to mention something to you though.

Blepharophimosis is just one of three main elements of

BPES (which stands for Blepharophimosis Ptosis Epicanthus Inversus Syndrome).

I know that is possible to get a diagnosis from a photograph,

because I asked an expert on BPES this question.

I was wondering, you might want the eye doctor at the Children’s

Hospital to be very specific … and tell you if the little boy has just Blepharophimosis

… or does he have BPES. This may affect your research on treatment

and grants.

All of this is quite a mouthful, isn’t it? J

You may find it useful to look at this article:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

especially the section called: Differential Diagnosis

I should point out that I am not a medic …. So all I can

do is to forward well written and trusted sources of information to you, and

other members of this group.

Regards

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of A

Sent: 23 December 2009 17:21

blepharophimosis

Subject: blepharophimosis New and how I found this group

Hi All,

I want to introduce myself. About an hour ago I learned about bleparaphimosis.

That is a mouthful! I and my fiance are hoping to adopt a little boy from

Russia. He is 14 months old. His photos that were sent to me were suspicious

for some kind of eye problem so I submitted his information to an eye doctor at

the Children's hospital where I work. Her immediate response was a resounding

he has Blepharophimosis. I don't have a lot of time right now to research but I

am hoping this group is a good start. I am 38 years old and live in

Pennsylvania on a small farm. We have 7 dogs, several cats. Horses, chickens, a

bird and two snakes. We are currently stuck in a messy adoption of a little

girl from another country, so we ventured off hoping to do a concurrent adoption

from Russia. The little guy was found on a special needs group and is in need

of an immediate home. I can't wait to start this journey. I love traveling

overseas!

I know it kind of stinks to ask this right off the bat, but does anyone know of

any non profits that may be willing to provide grants to help cover adoption

costs so this little guy can come home and get the eye care he needs?

Thanks for being here!

Ann Bates

[Guest guest]

Hi Shireen,

Thank you for the link and the points to think about. We most likely will not know if Little Guy has full BPES until he is adopted. We will have to move forward assuming the worst but hoping for the best. Thanks for the reply. I have learned a lot about this in the last week.

Ann

From: Shireen Mohandes <shireen@...>blepharophimosis Sent: Wed, December 23, 2009 3:52:16 PMSubject: RE: blepharophimosis New and how I found this group

Hi Ann

I am from the UK, so am unfamiliar with healthcare finance in the USA. I was going to mention something to you though.

Blepharophimosis is just one of three main elements of BPES (which stands for Blepharophimosis Ptosis Epicanthus Inversus Syndrome).

I know that is possible to get a diagnosis from a photograph, because I asked an expert on BPES this question.

I was wondering, you might want the eye doctor at the Children’s Hospital to be very specific … and tell you if the little boy has just Blepharophimosis … or does he have BPES. This may affect your research on treatment and grants.

All of this is quite a mouthful, isn’t it? J

You may find it useful to look at this article:

http://www.geneclin ics.org/servlet/ access?db= geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/ bpes/index. html

especially the section called: Differential Diagnosis

I should point out that I am not a medic …. So all I can do is to forward well written and trusted sources of information to you, and other members of this group.

Regards

Shireen Mohandes

London, England

From: blepharophimosis [mailto:blepharophi mosis@group s.com] On Behalf Of ASent: 23 December 2009 17:21blepharophimosisSubject: blepharophimosis New and how I found this group

Hi All,I want to introduce myself.. About an hour ago I learned about bleparaphimosis. That is a mouthful! I and my fiance are hoping to adopt a little boy from Russia. He is 14 months old. His photos that were sent to me were suspicious for some kind of eye problem so I submitted his information to an eye doctor at the Children's hospital where I work. Her immediate response was a resounding he has Blepharophimosis. I don't have a lot of time right now to research but I am hoping this group is a good start. I am 38 years old and live in Pennsylvania on a small farm. We have 7 dogs, several cats. Horses, chickens, a bird and two snakes. We are currently stuck in a messy adoption of a little girl from another country, so we ventured off hoping to do a concurrent adoption from Russia. The little guy was found on a special needs group and is in need of an immediate home. I can't wait to start this journey. I love traveling overseas! I know

it kind of stinks to ask this right off the bat, but does anyone know of any non profits that may be willing to provide grants to help cover adoption costs so this little guy can come home and get the eye care he needs?Thanks for being here!Ann Bates