new member

[Guest guest]

Best of luck and welcome to the group. Where are you from?

Leah

from NewZealand

blepharophimosis New member

> My daughter Grace, who is 8 months old, has been diagnosed with

> blepharophimosis. It came as a total surprise as no one else in the

> family has the condition. We have seen a wonderful doctor at our local

> hospital who is keen to do her best for us. We are still waiting for

> an appointment to see the genetics team but are seeing the eye

> specailist every 3 months. Grace is a very happy baby and is a delight

> to us all. She is however slightly behind in her development (she is

> not yet sitting up although she does have the strength to hold her

> self up.) It is very encouraging to read of people in similar

> situations and to see the children as they grow older. The pictures of

> children before and after surgery are also interesting. We are going

> to see the eye specialist again tommorrow and I am hoping to find out

> more about surgery and aiding Grace's development

>

>

>

>

>

>

>

>

[Guest guest]

>

Hi Crystal welcome to the group. My name is Kathy and I live in a

suburb of St. Louis, MO. My 19 year old daughter, her father, aunts,

uncles, grandfather, grand aunts and grand uncles all have BPES. I'm

searching for families with a history of BPES to ask if they also have

infertility problems. Almost all of the women in 's family have

been unable to conceive due to premature ovarian failure. This

failure is indicative of the type 1 version of the syndrome. Are

there any women in your family wiwith BPES that have experienced

fertility problems?

Kathy

> Hi my name is Crystal Berwick 23 and my 18 month old son Jordan, my

28

> year old husband and my 50 year old father-in-law have

> Blepharophimosis. Each generation getting not as bad. My son has had

> only 1 surgery but it was for the tear duct obstruction. He is due

to

> have the YV canthoplasty surgery on Dec 6, 2005. I am glad to find a

> website like this where you can talk to others going through the

> samething. My IM name is different than my name I registered

> under it is crytalskitle. Feel free to mess. I would love to talk to

> other people. I live in Northern California.

>

[Guest guest]

hi all! just checking in - love the pictures. will have to scan one in of my little angel, jenna.

I am curious to know if anyone in the group is from Connecticut? Please advise and have a wonderful day!KORBINTAI2LUV@... wrote:

wondering ... anyone ... IN LAS VEGAS>>>> JUST CURIOUS>> ALOT OF INFO ON DATABASE NOT FILLED >>>

L. Scopp

Independent Beauty Consultant

Kay, Inc.

Inspiring beauty. Enriching lives.

(203) 878-6099-home

(203) 556-2687-cell

www.marykay.com/jscopp

[Guest guest]

Hi there,

I am a new member too. I live in England, my name is and I'm

28 years old. I was born with ptosis. That's all i've never know

it as. I had a very happy childhood and can't remember a lot about

my operations when I was seven and eight years old. I hope to

continue to read about everyone's experiences and find out more

about me through my medical records. sarah

> > > > >

> > > > > Hi all,

> > > > > I am thankful to have found this group! My name is

> > and

> > > I

> > > > am

> > > > > affected with BPES and my daughter Paige was also born

with

> > it.

> > > > There

> > > > > is no other family history of BPES so it originated with

> me. I

> > > > had no

> > > > > idea what I had until my daughter was born with the same

> shaped

> > > > eyes

> > > > > two years ago and my husband and I started researching. I

> had

> > > > > corrective surgery when I was a year old where a plastic

> > surgeon

> > > > > corrected the inside corners, and then a follow up sugery

> was

> > > > > performed to lift the lids at age five. I have had no

other

> > > > surgeries.

> > > > >

> > > > > I am in the process of speaking with doctors in my area (I

> live

> > > in

> > > > > North Carolina) and I wanted to get some feedback from any

> of

> > > you

> > > > who

> > > > > might be able to help. I have spoken with both a

pediatric

> > > > > ophthalmologist and plastic surgeon. I told them that I

> would

> > > > want

> > > > > them to work together depending on their areas of

expertise

> > when

> > > > Paige

> > > > > has her surgeries. However, the plastic surgeon was

> explaining

> > > > that

> > > > > he would also want to do a bone graft on Paige in the

space

> > > where

> > > > the

> > > > > eye sits in the skull. He went on to explain that in

> > unaffected

> > > > > individuals, as they mature, the bone in the eye socket

> builds

> > > up

> > > > and

> > > > > as a result the eye socket gets smaller, allowing the eye

to

> > > > protrude

> > > > > just enough to create the " fold " in the eyelid. In the

case

> > with

> > > > > individuals with BPES, the eye socket in the skull remains

> > > > enlarged

> > > > > and therefore the eye sits further back in the skull. Has

> > > anyone

> > > > else

> > > > > ever heard of this?

> > > > >

> > > > > Everything else that the doctors have said relating to her

> > > > surgeries

> > > > > are very much like what I had done twenty-five years ago.

> That

> > > > was

> > > > > the only thing that made me feel uncertain. Any feedback

> you

> > > have

> > > > > would be appreciated.

> > > > >

> > > > > Regards,

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hi

Welcome to the group.

Here is the article that Maree was talking about:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 &

key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

You may like to look at the section called " Diagnosis " .

It is my understanding that it is possible to determine if a female of child

bearing age is type 1 or type 2 by doing routine [blood] tests. Putting it

another way, the presence of certain hormones, and the level of these

hormones is indicative of POF. The results of these tests is usually

available very quickly. I am pretty sure that your local doctor can arrange

to do this.

The tests that Maree is referring to - I THINK - is Genetic Testing. This

does taka a long time to do.

, where do you live? Perhaps I can help you by suggesting names of

geneticists who are familiar with BPES who work nearby.

Shireen

London, England

> blepharophimosis Re: New member

>

> Hi ,

> welcome to the group (if you are new!) In response to your

> question about finding out whether you are type 1 or 2 you

> would need to have blood tests. Here in New Zealand my

> daughter, 19yrs old & I, both have BPES so we went to see a

> geneticist, who was recommended by daughters eye surgeon, who

> then arranged for us to have blood tests but are still

> awaiting the results. That was December `04. Also have a look

> at msg 3013 - there is a good article that Shireen has

> posted. Around there too, I think there is quite a lot of

> discussion on the board about the issue of Type 1 & 2 - hope

> you find it helpful......

> Bye,

> Maree

>

>

> >

> > My medical records show I do have congential Blepharophimosis but

> > unsure whether this is type 1 or type 2. Will have to take

> the next

> > step and find this out. Any ideas how I can do this. Can

> I do this

> > through my local doctor. Thank you.

> >

>

>

>

>

>

>

>

[Guest guest]

Thanks to Maree and Shireen for replying, the article has been very

helpful when showing my GP. I printed the information off to show

him. He was very confused but has asked for advice from a genetist

at the research centre at the centre for life in Newcastle Upon

Tyne. Shireen if you have any further contacts that would be of

great use to inform my doctor. I am so pleased I have found this

site. Everyone's messages over the last week since I joined have

been very encouraging. I have also been able to access the photos

for the first time which takes me back to when I was a child and I

was surprised how similar some features are.

from

> > >

> > > My medical records show I do have congential Blepharophimosis

but

> > > unsure whether this is type 1 or type 2. Will have to take

> > the next

> > > step and find this out. Any ideas how I can do this. Can

> > I do this

> > > through my local doctor. Thank you.

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

> > >

> > > My medical records show I do have congential Blepharophimosis

but

> > > unsure whether this is type 1 or type 2. Will have to take

> > the next

> > > step and find this out. Any ideas how I can do this. Can

> > I do this

> > > through my local doctor. Thank you.

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Kathy

Thank you for sharing this with us. It is a blessing and a curse to

have knowledge of all of this and face these choices at such a young

age. I didn't know about this possible connection until after I had

my daughter(now 15 months). It sounds like she has a great mom and

dad who have raised her with love and care. If your daughter wants to

be a mom someday, she will be. Unfortunately it may or may not be

as " easy " for her as for others.

Again, thank you for sharing this with us.

Beth

In blepharophimosis , " z942271 " <z942271@y...> wrote:

>

>

> > > >

> > > > My medical records show I do have congential Blepharophimosis

> but

> > > > unsure whether this is type 1 or type 2. Will have to take

> > > the next

> > > > step and find this out. Any ideas how I can do this. Can

> > > I do this

> > > > through my local doctor. Thank you.

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Kathy ~

I am sorry that your daughter has to face this, I completely understand how you must be feeling. My daughter is only 3 months old and the infertility worries me, she is the only female so far in the family that has BPES so there is no way to know the possibility yet. I myself can't have anymore children for other reasons and I just wish that my baby will have the option when she is a women. The best advice that I can give you is to pray about whatever options you have and ask for help and comfort in whatever is right for you and her to decide. I wish you the best and much luck. ~ z942271 <z942271@...> wrote:

> > >> > > My medical records show I do have congential Blepharophimosis but > > > unsure whether this is type 1 or type 2. Will have to take > > the next > > > step and find this out. Any ideas how I can do this. Can > > I do this > > > through my local doctor. Thank you. > > >> > > > > > > > > > > > > >

[Guest guest]

Hi Shireen,

Thankyou for clarifying the blood tests question for . Yes I was

talking about the genetics test - I actually thought that was the

only way to determine if Type 1 or 2? We also had the other tests

done too, well did, to check her hormone levels - I think

they are looking for a raised FSH level which could indicate POF.

Hers were normal then which is a good sign. I`m now wondering if the

Type can be diagnosed through having the routine hormone blood test

why the genetic test, which , as you say takes quite a lot longer.

Please forgive me if you have explained this previously.........

Bye Maree

> > >

> > > My medical records show I do have congential Blepharophimosis

but

> > > unsure whether this is type 1 or type 2. Will have to take

> > the next

> > > step and find this out. Any ideas how I can do this. Can

> > I do this

> > > through my local doctor. Thank you.

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Kathy,

Maree here - thinking of you & with all this knowledge you have

to come to terms with. will be praying that the right decisions will

be made for everyone. We are still waiting for results for

whether type 1 or 2 & so she could be in the same situation as your

if she is type 1 - chances are she will be as I had an early

menopause too, but not before I conceived once!!! I have asked her

what will she do if she discovers she may be at risk of POF - she

says she would like to be having her children within 2-3yrs. She is

is a steady relationship which looks like it could go permanent but

these are still big decisions to make. Just one day at a time I say -

we`ll cross that bridge when we come to it. In the meantime - pray &

trust God - He knows......

Bye

Maree

> > > >

> > > > My medical records show I do have congential Blepharophimosis

> but

> > > > unsure whether this is type 1 or type 2. Will have to take

> > > the next

> > > > step and find this out. Any ideas how I can do this. Can

> > > I do this

> > > > through my local doctor. Thank you.

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Maree

I am going to find out for you and post it here.

I don't want to speculate - but I think I know the answer.

The test only gives you an answer about fertility - at the time you take the

test. Also, it think that there are lots of options available these days,

and even if the test turns out to be indicative of infertility, that is not

the " end of the road " .

More later

Shireen

> blepharophimosis Re: New member

>

> Hi Shireen,

> Thankyou for clarifying the blood tests question for .

> Yes I was talking about the genetics test - I actually

> thought that was the only way to determine if Type 1 or 2? We

> also had the other tests done too, well did, to check

> her hormone levels - I think they are looking for a raised

> FSH level which could indicate POF.

> Hers were normal then which is a good sign. I`m now wondering

> if the Type can be diagnosed through having the routine

> hormone blood test why the genetic test, which , as you say

> takes quite a lot longer.

> Please forgive me if you have explained this previously.........

> Bye Maree

>

>

> > > >

> > > > My medical records show I do have congential Blepharophimosis

> but

> > > > unsure whether this is type 1 or type 2. Will have to take

> > > the next

> > > > step and find this out. Any ideas how I can do this. Can

> > > I do this

> > > > through my local doctor. Thank you.

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Kathy. Thanks for your sharing what is a very big decision your

daughter faces. Nobody would want to be forced to decide about

children until they are ready to, particularly when a genetic

difference may be passed on. will know herself what is right

for her and accept her decision whatever that may be.

But your message brought up a question I have been toying with. When

is it a good time to find out which type of BPES a girl has? If

genetic tests take so long, should they be done early? My daughter

is only 3 years old and I have decided to wait until she can be

involved in the whole process. At the same time, not knowing if she

can have kids is on my mind a lot, not all the time, but fairly

often.

What do other members suggest? Should one wait until the young lady

is of child bearing age or is there anything to be gained from doing

genetic tests early?

P

> > > >

> > > > My medical records show I do have congential

Blepharophimosis

> but

> > > > unsure whether this is type 1 or type 2. Will have to take

> > > the next

> > > > step and find this out. Any ideas how I can do this. Can

> > > I do this

> > > > through my local doctor. Thank you.

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hello ,

Maree in NZ here. Regarding your question about whether there is any

gain in having genetic testing done early, my opinion is from one who

never had to face that decision! I only knew of the link between BPES

& infertility when I joined this group about 2 yrs ago. I would say

it would be better to wait till your daughter is older - the options

that would be open to her then, assuming she could have infertility

issues, would be way different to what is available now. And if you

were to find out now that she MIGHT be infertile later how would you

feel? Would it take the edge off the wonderful times you have with

her now or could you put it right out of your mind? As you have said

already you have decided to wait so she can be involved & I think

thats a good idea.

These are just some thoughts that came to me - others may feel

differently.

What is your daughters name & is there a history of BPES in the

family?

Bye for now

Maree

> > > > >

> > > > > My medical records show I do have congential

> Blepharophimosis

> > but

> > > > > unsure whether this is type 1 or type 2. Will have to take

> > > > the next

> > > > > step and find this out. Any ideas how I can do this. Can

> > > > I do this

> > > > > through my local doctor. Thank you.

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Thankyou Shireen - will be looking for it...........

Maree

> > > > >

> > > > > My medical records show I do have congential

Blepharophimosis

> > but

> > > > > unsure whether this is type 1 or type 2. Will have to take

> > > > the next

> > > > > step and find this out. Any ideas how I can do this. Can

> > > > I do this

> > > > > through my local doctor. Thank you.

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

If your son has BPES, the chances of passing it on to his own are

50/50.

--- In blepharophimosis , " myhonebee " <myhonebee@y...>

wrote:

>

> Hi,

> My name is Melisa. I have a 24 year old son with blepharophimosis.

He

> had his first surgery at age 4 months and his second one at age 6

> months. Before the surgeries, he could not sit up well and balance

> himself because he was constantly tilting his head back to see out

of

> his eyes. He later had another surgery at age 2 but that was to

try

> and correct a lazy eye. His father had ptosis of the eyelid and

ended

> up with over 14 surgeries which from the sounds of it may have been

> experimenting some on the doctor's part. My son still has sort of

a

> slanty eyed look but he is able to see. My ex-husband went on to

have

> another son in another marriage but that child did not have any eye

> problems. My son's father was one of 4 children but the only one

with

> the eye problem. What exactly are the odds or percentages of my

son

> passing on this syndrome to his children?

>

[Guest guest]

--- In blepharophimosis , " myhonebee " <myhonebee@y...>

wrote:

>

> Hi,

> My name is Melisa. I have a 24 year old son with blepharophimosis.

He

> had his first surgery at age 4 months and his second one at age 6

> months. Before the surgeries, he could not sit up well and balance

> himself because he was constantly tilting his head back to see out

of

> his eyes. He later had another surgery at age 2 but that was to

try

> and correct a lazy eye. His father had ptosis of the eyelid and

ended

> up with over 14 surgeries which from the sounds of it may have been

> experimenting some on the doctor's part. My son still has sort of

a

> slanty eyed look but he is able to see. My ex-husband went on to

have

> another son in another marriage but that child did not have any eye

> problems. My son's father was one of 4 children but the only one

with

> the eye problem. What exactly are the odds or percentages of my

son

> passing on this syndrome to his children?

>

Hi ,

My name is a and I live in Seattle, age 35. It is nice to read

of someone who is an adult with ptosis experience. I have only had

one surgery in my early 20's. I was shocked to read your ex had 14

surgeries. I know I need surgery again, as I now have to 'lift' my

brows to see better. (sigh). Even now, my dr's are conservatine to

another surgery because of scar tissue, age, etc....I still can not

believe 14 surgeries! Does he have mass scarring? I was also told

if I have children, the risk on passing along is 50%. My dr. warned

me of bearing children and I won't be having any.

Good luck to your son.

a

[Guest guest]

Dear a,

I just read your story! I hope that you are not choosing to have

children because of the chance of passing this on to them. I

personally don't have it, but my daughter does. But to me she is

perfect and I can't imagine life without her. She is 14 months old

and still to this day, her eyes are the same as the day she was

born. They have not developed at all. She wears glasses and is

just a happy little munchkin. Please, Please base your decison to

have children on whether you really want kids or not. To me, having

a child with a " handicap " is no different than having a normal

child. I also have a daughter who at age 13 was diagnosed with

Lymphoma Cancer. Our family has been so blessed with many things

and having help my daughter with cancer alot. We are

expecting another baby in April and are thrilled. However this one

is number 9 in line, so I think we are done!

Wishing you the Best, amy

> >

> > Hi,

> > My name is Melisa. I have a 24 year old son with

blepharophimosis.

> He

> > had his first surgery at age 4 months and his second one at age

6

> > months. Before the surgeries, he could not sit up well and

balance

> > himself because he was constantly tilting his head back to see

out

> of

> > his eyes. He later had another surgery at age 2 but that was to

> try

> > and correct a lazy eye. His father had ptosis of the eyelid and

> ended

> > up with over 14 surgeries which from the sounds of it may have

been

> > experimenting some on the doctor's part. My son still has sort

of

> a

> > slanty eyed look but he is able to see. My ex-husband went on

to

> have

> > another son in another marriage but that child did not have any

eye

> > problems. My son's father was one of 4 children but the only one

> with

> > the eye problem. What exactly are the odds or percentages of my

> son

> > passing on this syndrome to his children?

> >

> Hi ,

>

> My name is a and I live in Seattle, age 35. It is nice to

read

> of someone who is an adult with ptosis experience. I have only

had

> one surgery in my early 20's. I was shocked to read your ex had

14

> surgeries. I know I need surgery again, as I now have to 'lift'

my

> brows to see better. (sigh). Even now, my dr's are conservatine

to

> another surgery because of scar tissue, age, etc....I still can

not

> believe 14 surgeries! Does he have mass scarring? I was also

told

> if I have children, the risk on passing along is 50%. My dr.

warned

> me of bearing children and I won't be having any.

> Good luck to your son.

> a

>

[Guest guest]

Hi Melisa, welcome to the group. Yes, there is a 50/50 chance of

passing on the gene to each child. This means if he doesn`t pass it

on then it stops there. I was one of 7 children & the only one with

BPES (neither of my parents have). I then had one child, a daughter,

who has BPES. We also have sight probs & both wear glasses -well,

does whe she hasn`t lost or broken them!

Bye for now

Maree

--- In blepharophimosis , " myhonebee " <myhonebee@y...>

wrote:

>

> Hi,

> My name is Melisa. I have a 24 year old son with blepharophimosis.

He

> had his first surgery at age 4 months and his second one at age 6

> months. Before the surgeries, he could not sit up well and balance

> himself because he was constantly tilting his head back to see out

of

> his eyes. He later had another surgery at age 2 but that was to

try

> and correct a lazy eye. His father had ptosis of the eyelid and

ended

> up with over 14 surgeries which from the sounds of it may have been

> experimenting some on the doctor's part. My son still has sort of

a

> slanty eyed look but he is able to see. My ex-husband went on to

have

> another son in another marriage but that child did not have any eye

> problems. My son's father was one of 4 children but the only one

with

> the eye problem. What exactly are the odds or percentages of my

son

> passing on this syndrome to his children?

>

[Guest guest]

> > >

> > > Hi,

> > > My name is Melisa. I have a 24 year old son with

> blepharophimosis.

> > He

> > > had his first surgery at age 4 months and his second one at age

> 6

> > > months. Before the surgeries, he could not sit up well and

> balance

> > > himself because he was constantly tilting his head back to see

> out

> > of

> > > his eyes. He later had another surgery at age 2 but that was

to

> > try

> > > and correct a lazy eye. His father had ptosis of the eyelid

and

> > ended

> > > up with over 14 surgeries which from the sounds of it may have

> been

> > > experimenting some on the doctor's part. My son still has sort

> of

> > a

> > > slanty eyed look but he is able to see. My ex-husband went on

> to

> > have

> > > another son in another marriage but that child did not have any

> eye

> > > problems. My son's father was one of 4 children but the only

one

> > with

> > > the eye problem. What exactly are the odds or percentages of

my

> > son

> > > passing on this syndrome to his children?

> > >

> > Hi ,

> >

> > My name is a and I live in Seattle, age 35. It is nice to

> read

> > of someone who is an adult with ptosis experience. I have only

> had

> > one surgery in my early 20's. I was shocked to read your ex had

> 14

> > surgeries. I know I need surgery again, as I now have to 'lift'

> my

> > brows to see better. (sigh). Even now, my dr's are conservatine

> to

> > another surgery because of scar tissue, age, etc....I still can

> not

> > believe 14 surgeries! Does he have mass scarring? I was also

> told

> > if I have children, the risk on passing along is 50%. My dr.

> warned

> > me of bearing children and I won't be having any.

> > Good luck to your son.

> > a

> >

>

Hi Amy,

Thank you for your email message and sharing your story. I do

appreciate it. I am not in a relationship currently and I am almost

36....I think lifeis just funny...it is never how we really plan it

to be. I sure thought I would have kids and be married by now. I am

still learning about this bleph/ptosis disease and it scares me to

have a child. I got tears in my eyes though, as I read your

thoughts. You appear to be a remarkable woman and mother. If I met

the 'right guy'. I would consider it with his support. I will think

about what you said. Smiles, a

[Guest guest]

In a message dated 11/15/05 2:23:25 PM Pacific Standard Time, vann_donna@... writes:

that this is normal for someone with BPES as mobility

can be late to develop - did anyone else experience this

no problems for my dd.. she was walking at 9mths... and hasnt s toped... seriously ..

[Guest guest]

Hi Donna

Welcome to the group.

I wanted to let you know that the UK people are having a get-together on

Sunday the 18th December, at a coffee lounge in a hotel near

Station, in London.

If you, and your family, would like to join us, you are very welcome. I

think there will be about 7 or 8 families turning up, so it will be a good

opportunity to meet people of different ages. Drop by any time from 11:00am

till 1:00pm. I will post more detailed information about 10 days before the

date.

I live in London, am 44 years old, and I am the only person in my family

with BPES. I had surgery at 2.5, 12 and 18 years of age. The details aren't

too relevant as there have been so many advances since those days.

I am lucky in that very soon after I was born the doctors worked out what

the problem was, and I was treated by a well known surgeon who I always

remembered as being a very nice person. I never found the operations to be

scary or troublesome. My expectations were always set, and always met. To

be honest, I know that had I been born in this day and age, the final result

of the surgery would have been better - because I have seen the fantastic

results obtained by other people who have had the benefit of the many gifted

surgeons.

I find the sunlight irritating. Especially in the winter when the sun is so

low. I have to wear sunglasses when outdoors a lot of the time, even when it

is cloudy. I am a little short sighted, but so are lots of people. I find

wearing glasses very comfortable, as on a cold windy day they provide me

with some protection.

I would like to suggest that you ask your GP to consider referring you to Mr

Collin at Moorfields, in London. He is considered to be one of the top 5 in

his field, in the world. But I don't know where you live, so that may not be

so convenient for you.

If you would to get in touch by phone, or possibly meet another family who

live near you, then please let me know and I may be able to assist you.

Take care

Shireen

London, England

> blepharophimosis New Member

>

> Hi,

>

> My name is Donna and I have a 15 month old boy, who has BPES.

> is a beautiful, happy baby who we love very much and he

> seems to have a knack for making everyone who meets him fall

> in love with him.

> He has a 4 year old sister and they adore each other.

>

> He is the first in the family with BPES, so until he was born

> we had never heard of it. It is nice to read messages and

> hopefully learn from everyones experiences.

>

> has only recently started crawling and standing and we

> have been told by the drs. that this is normal for someone

> with BPES as mobility can be late to develop - did anyone

> else experience this? Although now he is coming on leaps and bounds.

>

> It has taken time for me to pluck up the courage to join the

> group but I guess that I need to know more about the surgery

> he will face when he is older.

>

> We live in the UK and would be interested to hear from others

> in the UK so we can share information on doctors etc.

>

> Best Wishes to you all

>

[Guest guest]

hi there Donna and ... my name is tonikka and my son Lynden who is 8 is the one and only to have BPES, my family and I live in Edmonton Alberta Canada. welcome to the group.... very very helpful with info you may need.

first and foremost always ask your doctor and don't hesitate to get a second opinion to any questions you have or any doubts you have also.

my son Lynden had his 1st surgery at 5 weeks old as it was deemed highly necessary due to his droopy lids being so severe....(check out lyndens photos in the albums if you would like) he then went on to have 3 more surgeries, the last at 5 years old.

again welcome to the group, glad you were able to "to pluck up the courage to join the group "

talk to you soon

tonikka, Lynden, and hunter

Tonikka and Chris

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of vann_donnaSent: November 15, 2005 3:11 PMblepharophimosis Subject: blepharophimosis New MemberHi,My name is Donna and I have a 15 month old boy, who has BPES. is a beautiful, happy baby who we love very much and he seems to have a knack for making everyone who meets him fall in love with him. He has a 4 year old sister and they adore each other.He is the first in the family with BPES, so until he was born we had never heard of it. It is nice to read messages and hopefully learn from everyones experiences. has only recently started crawling and standing and we have been told by the drs. that this is normal for someone with BPES as mobility can be late to develop - did anyone else experience this? Although now he is coming on leaps and bounds.It has taken time for me to pluck up the courage to join the group but I guess that I need to know more about the surgery he will face when he is older. We live in the UK and would be interested to hear from others in the UKso we can share information on doctors etc.Best Wishes to you all

[Guest guest]

Hi Donna,

Welcome to the group:) You will find a LOT of support and help with questions you may have within the group:)

We have a son Ethan (pix of him at site, wearing pumpkin suit) he is now 2, turning 3 January 24th 06:) He is also the first in the family with BPES, so a BIG, beautiful surprise:) Like you said about , the same is with our Ethan, he has this something extra that makes everyone around him smile and just adore him! My mum always says to me, "I know I shouldn't have favourites! but there is something extra special about him!" Ethan has a beautiful nature, loves to cuddle and smooch, and just lights up a room with his smile! But of course has his moments as well! He does have a 6 year old brother to bug him!

Developmentally he is up there with his brother, if not smarter than he was at his age, he can count to about 15, sometimes getting numbers mixed up, he can say letters that we write down, kinda knows his alphabet...he was walking a bit later than his brother, about 13 months all by himself, but walking with a walker by 9 months, and crawling between 6-8 months. He has never had a chin up posture to see, he always runs around with his head straight in front not tilted back. He has had no surgery yet, we go the the opthalmologist on his birthday each year now, so as long as it is not affecting his eyesight then we'll take it as it comes:)

Take care and talk soon.

Leanne and family (New-Zealand)

-- blepharophimosis New Member

Hi,

My name is Donna and I have a 15 month old boy, who has BPES.

is a beautiful, happy baby who we love very much and he seems to

have a knack for making everyone who meets him fall in love with him.

He has a 4 year old sister and they adore each other.

He is the first in the family with BPES, so until he was born we had

never heard of it. It is nice to read messages and hopefully learn

from everyones experiences.

has only recently started crawling and standing and we have been

told by the drs. that this is normal for someone with BPES as mobility

can be late to develop - did anyone else experience this? Although

now he is coming on leaps and bounds.

It has taken time for me to pluck up the courage to join the group but

I guess that I need to know more about the surgery he will face when

he is older.

We live in the UK and would be interested to hear from others in the UK

so we can share information on doctors etc.

Best Wishes to you all

[Guest guest]

My daugher is 15 months and started to walk at 13 -14 months, crawled

on all fours at 11-12 months. Some people in this group have not had

this experience, I think it depends on the child. This is also still

considered " normal " development and not " delayed " . I worried about

Lily's balance.

I will write more, wonderful to hear from someone with a baby the

same age!

Beth 35

Lily 15 months

(both with BPES)

>

> Hi,

>

> My name is Donna and I have a 15 month old boy, who has

BPES.

> is a beautiful, happy baby who we love very much and he seems

to

> have a knack for making everyone who meets him fall in love with

him.

> He has a 4 year old sister and they adore each other.

>

> He is the first in the family with BPES, so until he was born we

had

> never heard of it. It is nice to read messages and hopefully learn

> from everyones experiences.

>

> has only recently started crawling and standing and we have

been

> told by the drs. that this is normal for someone with BPES as

mobility

> can be late to develop - did anyone else experience this? Although

> now he is coming on leaps and bounds.

>

> It has taken time for me to pluck up the courage to join the group

but

> I guess that I need to know more about the surgery he will face

when

> he is older.

>

> We live in the UK and would be interested to hear from others in

the UK

> so we can share information on doctors etc.

>

> Best Wishes to you all

>