Hi Simone~

It was so interesting hearing about your situation. You see with my family,
there is no one who has Stickler's or any symptoms who have been related to
Stickler's. That is why they are calling Cale a "new mutation". Also, there has
not been anyone in my family that has had multiple miscarriages like I have
either. So, why all the sudden do I have all these miscarriages and the one
child I do have has PRS and Stickler's. I am tired of people telling me I have
had a "run of bad luck." 4 miscarriages is not a run of bad luck, there is
something wrong. Now that I have had 3 in a row, they will now do some testing
on me to see if there is a deficiency of some kind. I will be sure to let you
all know what they come up with and if it could be at all connected to why Cale
has the conditions that he has. Thanks for listening to me!

Andrea
----- Original Message -----
From: leisurefun2003<mailto:simonehill.leisurefun@...>
To: sticklersyndrome@yahoogroups.com<mailto:sticklersyndrome@yahoogroups.com>
Sent: Monday, September 06, 2004 6:28 PM
Subject: [Stickler Syndrome ] Re: Just a question....


It was very interesting to read what you posted. I nearly lost both
my children at 12 weeks, but fortunately with a lot of bed rest was
able to continue through the pregnancies. Damon is fine, with no
signs of any problems, but Alannah has PRS, cleft, mod hearing loss,
and they have just discovered that she is very slightly short
sighted.
If she does end up diagnosed with Sticklers, this could all make
sense, with it being heredity. I am starting to learn more about my
family history now.
I know my Mum had 6 miscarriages and she was only able to "hold
onto" me, her miracle baby. However I was born with a cleft palate.
My maternal grandmother only had one child too.
My Mum suffers from glaucoma, cataracts and has rhumetoid arthritis.
My grandmother also suffered from cataracts and had a detached
retina at the age of 70.
Both of them had/have ongoing heart problems - both having had heart
attacks and angina heart. However I don't really know what all this
means except that I am going to ask for everything to be thoroughly
investigated.
Don't know if I have helped - I am new to all this too.
If any one else has a similar experience, please let me know.

Simone



--- In sticklersyndrome@yahoogroups.com, "cales_mom"
<gressman1@m...> wrote:
> Hi group~
> Well, once again, I am fairly new here but the vetrans of this
group
> have made me feel so overly welcome here that I am now coming to
you
> with a very personal question and am just looking for any and all
> feedback that some of you may have.
>
> My son just turned 5 and as you all know with these PRS babies, he
> was such a huge focus for me while he was small that I never
really
> thought about having another baby. Once he got his trach out, I
just
> kind of wanted to let him be a "normal" boy for a while and I just
> wanted to enjoy that stage with him as well. Finally, when he
turned
> 4, I thought I better get on the ball if we were going to have a
> little brother or sister for my little man. My husband and I got
> pregnant right away but I had a miscarriage. I had another
> miscarriage in June and I had another miscarriage very recently.
> This was my 4th, because I had one before Cale was born as well.
My
> doctore tried, up until this last one, tell me that I was just
> having a "run of bad luck" but I am not entirely convinced of
that.
> I have now had 4 miscarriages and 1 child with PRS and SS (which
> neither are due to heredity.) I was doing some reading after
> miscarriage #3 and it said that if there was a lack of vitamins A,
> E, or K that the women will be prone to miscarriage and if she is
> able to carry her child full term that the baby will be prone to
> having a cleft palate. Of coarse, when I was reading this I was
> shocked because it was as if they were describing me! I was just
> wondering if there are any other mom's out there that have had
this
> experience, if there is something else I should be looking into as
> far as a deficiency that I may have, or just anything! I know
these
> questions are very personal so you can email me directly at
> gressman1@m... if you don't feel comforitable posting. I would
> love to hear from you!


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