Hi Liz

[Guest guest]

Hi Liz,

I just read your post and about your husbands brother....My husband and myself do not have bleph and nor does it run in our family??? Our 1st son does not have bleph, but our 2nd son does??? We were told that our 1st son who doesn't have bleph still has a 50/50 chance of having a baby with it, because my husband and I do not have it but still had a baby with it! And if we have another baby there is that 50/50 chance of having another with bleph, which does not stop us from trying for a 3rd baby which we are trying for now:) Do you know more on that subject??? Would love to hear if you do:)

How come your husbands brother has been told he won't have a baby with bleph? Does bleph run on your husbands side of the family? Or is he the only one with it, like our wee guy:)

Look forward to hearing from you soon....

Leanne and family (NZ)

-- blepharophimosis Re: Will my next baby have BPES?

>

> Donna,

Before answering your question, I will quickly explain my history

with BPES.

My husband was diagnosed 32 years ago, after many referrals, with

congenital pstosis. When we decided to have a baby we were assured

that this was not a heriditary condition. Upon the birth of my

beautiful, bright and wonderful son it became apparent that he had

inherited his father's "condition". Four weeks after my son's birth

he was diagnosed with BPES.

We are so thankful that our son has been correctly diagnosed as the

genetic clinic have been so helpful and have done so much for us.

Basically, we have a 50/50 chance of having a baby with BPES.

However, as my husband's brother does not have the condition it will

not be carried (as has not been) to his children.

I would advise to take the time to talk to geneticist. I am not

getting any younger myself, but believe that their expertise,

experience and intelligence is worth the wait even though

appointments may not be frequent. Our geneticist and his cousellor

are amazing.

My husband undertook the testing to see whether or not they could

identify the "mutated" gene. There was only a 50/50 chance of

finding the gene, but they did find the "mutated" gene. With this

knowledge we are enabled with more of an ability to make decisions

in the future.

On a further point to other persons who may read this message,

please respect your doctors and specialists as they have many years

of experience and study. The condition is vary rare, and even

though they may appear uncaring it is because they have no

experience and are interested in the condition. For example, I took

my son to emergency as he was very ill with vomiting. The doctor,

for a moment, was fascinated with my son's eye condition as he had

never seen it - as had no-one in ever my town of 40,000 people.

Good luck in the future.

Liz

Hi all,

> I haven't posted much here but when I have, I just get overwhelmed

> with the response - it has helped so much since Halle's diagnosis

of

> bleph in November. Halle is now 10mos old and doing wonderfully!

>

> My question is not directly related to Halle this time. I've

always

> wanted to have 4 children...just something I've told people even

when

> I was a little girl. My son is now 9, my daughter is 6 and Halle

is

> 10mos. Halle was the first to have bleph - in our family, and in

> this province!

>

> So my question is this....does this mean that either myself or my

> husband now carry this gene permanently? Or was it a one time

thing?

> I know that Halle has this and will have 50-50 chance of passing

it

> on to her children. But what about another child that I would

have?

> In all honesty, it would not affect my decision one way or another

> but I know it would my husbands. The geneticist we saw in November

> mentioned testing on me and my husband...what are they testing

for?

> To see if we carry this gene? Is that something they can find out?

>

> I had emailed all these questions to the geneticist hoping for

> answers but she merely told me that we would discuss it all at our

> next appointment in April. Well, I'm not getting any younger and

am

> anxious to start trying.

>

> Any words of wisdom here? I hate not knowing the answers to these

> questions !@#%$@ If any of you can help me, I would really

> appreciate it!!!

>

> Hugs to you all!

> Donna