-----Original Message-----
From: Bonnie Swary [mailto:bswary@...]
Sent: Monday, December 13, 1999 11:37 AM
To: Goldenhar Syndrome
Subject: Re: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

Good luck in Texas.  My prayers will be with Avery.

Bonnie (mother of Katie 15/w GS)

JDykzeul@... wrote:

> Goldenhar Syndrome - http://i.am/bbds.page/
>
> I wanted to share with you all that tomorrow we are finally flying to San
> Antonio (from CA)  to see Dr. Campbell an orthopedic surgeon who does a
rib
> expansion surgery.  We have been researching this for months and tomorrow
is
> the day.  Our daughter Avery will have an extensive radiology workup when
we
> get there and we will hopefully find out if she is a good canditate for
the
> surgery.  Her ribs on the left side are compressing her lung and maybe
this
> procedure will be the answer for her.  Keep your fingers crossed for her.
> Thanks for you help and encouragment.
> Jennifer Dykzeul
>
> ______________________________________________________________________
> To unsubscribe, write to Goldenhar-unsubscribe@...
> ______________________________________________________________________
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remodeling.  Hurry, sweepstakes ends December 30, 1999. Click to enter
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______________________________________________________________________
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______________________________________________________________________
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Oh how I wish I could get this one figured out.
I am sorry for any repeat messages that have been sent out lately, My
settings got all screwy when Scott redid our computer, I hope to have it
figured out soon.

Hugs of Support and Understanding,
Barb Miles
(mother to Sara, 4 years old with Goldenhar Syndrome)

Goldenhar Syndrome Support Network http://i.am/bbds.page
Help Raise money for Goldenhar Syndrome Support Network at iGive.com
http://www.iGive.com/html/ssi.cfm?cid=2696&mid=13537

-----Original Message-----
From: armelle et fred [mailto:mariusm@...]
Sent: Monday, December 13, 1999 3:03 AM
To: Goldenhar Syndrome
Subject: Re: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

Good luck to all of you.
I hope everything going well for Avery.

Armelle mother of Marius 9 ms


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-----Original Message-----
From: Abest32@... [mailto:Abest32@...]
Sent: Monday, December 13, 1999 1:46 AM
To: Goldenhar@...
Subject: Re: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

In a message dated 12/12/99 5:32:06 PM Pacific Standard Time,
JDykzeul@... writes:

<< Keep your fingers crossed for her.
  Thanks for you help and encouragment. >>

I just wanted to wish you and Avery and the rest of your family the best of
luck in San Antonio.  Dylan has fused ribs on one side also, so I'll be
anxious to hear how the radiology and potentially the surgery goes.

Best wishes!
Aunt Ashley


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-----Original Message-----
From: Tiggr6998@... [mailto:Tiggr6998@...]
Sent: Sunday, December 12, 1999 8:58 PM
To: Goldenhar@...
Subject: Re: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

My daughter Samantha is suppose to see him and i get all my information
during the summer and i have called Dr.Campbell and a date was never set. I
guess i must call because i need my daughters surgery done ASAP because i am
pregnant. Samanthas doc. from Philly wanted to go with but i dont want them
to do the surgery when i cant fly. Has anyone been in this situation? If so
please help. Thank you.

Christine mother to Samantha,2w/g/s


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-----Original Message-----
From: Tiggr6998@... [mailto:Tiggr6998@...]
Sent: Sunday, December 12, 1999 9:00 PM
To: Goldenhar@...
Subject: Re: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

I hope everything goes okay with the surgery if you could please give me so
detail so i know what to expect when Samantha gets her surgery done. I will
be thinking of you both tomorrow. Good Luck.

Christine mother to Samantha,2w/g/s


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-----Original Message-----
From: RAP12751@... [mailto:RAP12751@...]
Sent: Sunday, December 12, 1999 7:36 PM
To: Goldenhar@...
Subject: Re: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

I'll be praying that all goes well for Avery.  Here's hoping a safe trip and
return for you all.

Allen Powers
Caleb's grandpa


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-----Original Message-----
From: Barb Miles [mailto:bbds.page@...]
Sent: Sunday, December 12, 1999 6:09 PM
To: Goldenhar Syndrome
Subject: RE: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

Good Luck to both you and Avery, Jennifer.
I hope for Avery's sake all goes well and that she will be a good candidate
for the surgery.
Best Wishes and Hugs of Support and Understanding,
Barb Miles
(mother to Sara, 4 years old with Goldenhar Syndrome)

Goldenhar Syndrome Support Network http://i.am/bbds.page
Help Raise money for Goldenhar Syndrome Support Network at iGive.com
http://www.iGive.com/html/ssi.cfm?cid=2696&mid=13537

-----Original Message-----
From: JDykzeul@... [mailto:JDykzeul@...]
Sent: Sunday, December 12, 1999 6:31 PM
To: Goldenhar@...
Subject: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

I wanted to share with you all that tomorrow we are finally flying to San
Antonio (from CA)  to see Dr. Campbell an orthopedic surgeon who does a rib
expansion surgery.  We have been researching this for months and tomorrow is
the day.  Our daughter Avery will have an extensive radiology workup when we
get there and we will hopefully find out if she is a good canditate for the
surgery.  Her ribs on the left side are compressing her lung and maybe this
procedure will be the answer for her.  Keep your fingers crossed for her.
Thanks for you help and encouragment.
Jennifer Dykzeul


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
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Win a new refrigerator, stove, dishwasher and $10,000 for remodeling.
Hurry, sweepstakes ends December 30, 1999. Click to enter
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______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
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Win a new refrigerator, stove, dishwasher and $10,000 for remodeling.
Hurry, sweepstakes ends December 30, 1999. Click to enter
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-----Original Message-----
From: JDykzeul@... [mailto:JDykzeul@...]
Sent: Sunday, December 12, 1999 6:31 PM
To: Goldenhar@...
Subject: Avery's going to Texas


Goldenhar Syndrome - http://i.am/bbds.page/

I wanted to share with you all that tomorrow we are finally flying to San
Antonio (from CA)  to see Dr. Campbell an orthopedic surgeon who does a rib
expansion surgery.  We have been researching this for months and tomorrow is
the day.  Our daughter Avery will have an extensive radiology workup when we
get there and we will hopefully find out if she is a good canditate for the
surgery.  Her ribs on the left side are compressing her lung and maybe this
procedure will be the answer for her.  Keep your fingers crossed for her.
Thanks for you help and encouragment.
Jennifer Dykzeul


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
Enter to win the Kenmore Elite dream kitchen sweepstakes only at sears.com!
Win a new refrigerator, stove, dishwasher and $10,000 for remodeling.
Hurry, sweepstakes ends December 30, 1999. Click to enter
http://www.listbot.com/links/sears4. See site for official rules.

-----Original Message-----
From: Barb Miles [mailto:bbds.page@...]
Sent: Sunday, December 12, 1999 1:32 PM
To: Goldenhar Syndrome
Subject: RE: Hello!


Goldenhar Syndrome - http://i.am/bbds.page/

Welcome to our group Diana,
You are in great company, we are always discussing the different aspects of
Goldenhar Syndrome (often referred to GS on our list) that we have had
personal experience with, whether through our GS child or through the
wonderful adults on our list who have grown up with this condition.
I hope you are able to put your fears at rest, and feel comfortable in our
presence.

Hugs of Support and Understanding,
Barb Miles
(mother to Sara, 4 years old with Goldenhar Syndrome)

Goldenhar Syndrome Support Network http://i.am/bbds.page
Help Raise money for Goldenhar Syndrome Support Network at iGive.com
http://www.iGive.com/html/ssi.cfm?cid=2696&mid=13537

-----Original Message-----
From: Diana Morian [mailto:dmorian@...]
Sent: Sunday, December 12, 1999 8:58 AM
To: Goldenhar@...
Subject: Hello!


Goldenhar Syndrome - http://i.am/bbds.page/

I am 37 years old and have just recently been diagnosed with Goldenhar
Syndrome.  What it really boils down to is, I have just recently found a
doctor that knows about my condition and can put a name to it.  I have
always been told by my mother that I was one of just a few and that was
about all she has ever said about it.  She has never told me about the
surgery I had when I was around two for the skin tags around my ears and
eyes, my older sister told me.  I have spent the last few days trying to get
all the information I can about this syndrome because I am concerned about
underlying conditions that the doctors may need to be checking on.  I really
don't know what else to say right now except that I am so glad I have found
someone else to talk with that knows what I am going through.


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
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Win a new refrigerator, stove, dishwasher and $10,000 for remodeling.
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-----Original Message-----
From: Plynn1013@... [mailto:Plynn1013@...]
Sent: Sunday, December 12, 1999 10:54 AM
To: Goldenhar@...
Subject: Re: Hello!


Goldenhar Syndrome - http://i.am/bbds.page/

Hi,

You are not alone.  I was 21 years of age when I found out what hemifacial
microsomia was and this is what my birth defect was called.  I am now 40
years old, and I just recently found and subscribed to this list about five
months ago.

Pat Davis


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
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Win a new refrigerator, stove, dishwasher and $10,000 for remodeling.
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OMIM ENTRY 192350
-----Original Message-----
From: The DesJardins Family [mailto:barjo@...]
Sent: Sunday, December 12, 1999 11:43 AM
To: Goldenhar Syndrome
Subject: Re: to Desjardins family


Goldenhar Syndrome - http://i.am/bbds.page/
Thank you for the useful information, we printed a lot of it out and will
share it with those involved in her care.  There were new updates and
information that we hadn't seen yet.

Barbara Jo, Shaun and Family

   ----- Original Message -----
   From: armelle et fred
   To: Goldenhar Syndrome
   Sent: Saturday, December 11, 1999 11:16 AM
   Subject: to Desjardins family


   Goldenhar Syndrome - http://i.am/bbds.page/

   Unfortunately I don't know directly about imperforate anus problem. But
   may be you can find info if you looking for Townes Brocks syndrome or
   Nager syndrome it's two syndrome the doc suggest before for Marius and I
   know for Townes Brocks anal problem are current. May be it's a way to
   find info...
   I join you small info I have on Vater syndrome

   Hope this help

______________________________________________________________________ To
unsubscribe, write to Goldenhar-unsubscribe@... Start Your Own FREE
Email List at http://www.listbot.com/links/joinlb

-----Original Message-----
From: Trix M [mailto:FemaleCartman@...]
Sent: Sunday, December 12, 1999 4:14 AM
To: Goldenhar Syndrome
Subject: So sorry...


Goldenhar Syndrome - http://i.am/bbds.page/

Dear Group,

I am very sorry for posting with html on my email.  I totally forgot and
was not taking in account the fact that, that would interfere with some
of you being able to get the message correctly.  :(  I am very sorry for
that.

One more thing I know no one has really determined the cause of GS but I
had a few thoughts.  First my mother almost died when she had my brother
(the first born,  I am the third) and she also had a miscarriage between
my sister and I.  One more thing I thought about, my mother was
diagnosed with Parkinson's Disease when I was five.  They did not
determine when it started so I thought maybe she may have already had PD
while pregnant with me.  So I was just curious what you all thought, if
maybe something had some kind of connection or if you have ever heard of
similar circumstances.  I am just curious.  I know these thoughts are
all a shot in the dark, but it never hurts to ask.


Thanks and Happy Holidays!!!


______________________________________________________________________
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Start Your Own FREE Email List at http://www.listbot.com/links/joinlb

-----Original Message-----
From: Diana Morian [mailto:dmorian@...]
Sent: Sunday, December 12, 1999 8:58 AM
To: Goldenhar@...
Subject: Hello!


Goldenhar Syndrome - http://i.am/bbds.page/

I am 37 years old and have just recently been diagnosed with Goldenhar
Syndrome.  What it really boils down to is, I have just recently found a
doctor that knows about my condition and can put a name to it.  I have
always been told by my mother that I was one of just a few and that was
about all she has ever said about it.  She has never told me about the
surgery I had when I was around two for the skin tags around my ears and
eyes, my older sister told me.  I have spent the last few days trying to get
all the information I can about this syndrome because I am concerned about
underlying conditions that the doctors may need to be checking on.  I really
don't know what else to say right now except that I am so glad I have found
someone else to talk with that knows what I am going through.


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
Enter to win the Kenmore Elite dream kitchen sweepstakes only at sears.com!
Win a new refrigerator, stove, dishwasher and $10,000 for remodeling.
Hurry, sweepstakes ends December 30, 1999. Click to enter
http://www.listbot.com/links/sears4. See site for official rules.

-----Original Message-----
From: The DesJardins Family [mailto:barjo@...]
Sent: Saturday, December 11, 1999 6:29 PM
To: Goldenhar Listbot
Subject: Thank you


Goldenhar Syndrome - http://i.am/bbds.page/
Trixy,

Thank you for your response.  The E-Mail went through fine this time.  We
appreciate all your thoughts and concerns for Shauna.  We are reading over
several replies and references from the group on this topic.  For you and
anyone interested here is a collage from Shauna's first B-Day, and her
brother's 18th.

Shaun, Barbara Jo & Family


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unsubscribe, write to Goldenhar-unsubscribe@... Start Your Own FREE
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-----Original Message-----
From: Barb Miles [mailto:bbds.page@...]
Sent: Saturday, December 11, 1999 2:24 PM
To: Goldenhar Syndrome
Subject: RE: Thanks for the warm welcome and Happy Holidays!


Goldenhar Syndrome - http://i.am/bbds.page/

Thank you very much for the well wishes Trix.
But due to an amount of members who recieve text format email only, I'll
have to ask you to keep the html messages simple.
Thank you very much for Understanding.
Barb Miles


-----Original Message-----
From: Trix M [mailto:FemaleCartman@...]
Sent: Friday, December 10, 1999 3:40 AM
To: Goldenhar@...
Subject: Thanks for the warm welcome and Happy Holidays!


Goldenhar Syndrome - http://i.am/bbds.page/
MERRY CHRISTMAS!!! HO HO HO!!! HAPPY NEW
YEAR!!!_____________________________________________________________________
_ To unsubscribe, write to Goldenhar-unsubscribe@... Start Your Own
FREE Email List at http://www.listbot.com/links/joinlb


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
Great price! The Toshiba Satellite 2100CDS is one of CDW.com's most popular
mobile computing solutions. At just 6.2 pounds, this 400MHz notebook
computer is a fantastic bargain at only $1199.85. <<Click here OR Follow the
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-----Original Message-----
From: armelle et fred [mailto:mariusm@...]
Sent: Saturday, December 11, 1999 12:16 PM
To: Goldenhar Syndrome
Subject: to Desjardins family


Goldenhar Syndrome - http://i.am/bbds.page/

Unfortunately I don't know directly about imperforate anus problem. But
may be you can find info if you looking for Townes Brocks syndrome or
Nager syndrome it's two syndrome the doc suggest before for Marius and I
know for Townes Brocks anal problem are current. May be it's a way to
find info...
I join you small info I have on Vater syndrome

Hope this help



______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
Start Your Own FREE Email List at http://www.listbot.com/links/joinlb

-----Original Message-----
From: Bob Howse [mailto:howserb@...]
Sent: Thursday, December 09, 1999 11:53 PM
To: Miles, Barb
Subject: Missing eye


Goldenhar Syndrome - http://i.am/bbds.page/

Eveline,

My son, Bennett, was born with basically no right eye.  He got a conformer
when he was one month old.  The conformer is a piece of plastic sometimes
with a handle on the front about 1/2 an inch long that fits in the eye
socket so the bone will grow around it.  The ocularist will keep enlarging
it (almost monthly at first) and then slower as growing occurs.  Bennett was
able to get his custom painted eye after only one month with the conformer.
They cost about $1000-1200 U.S.  Sometimes, it gets slimy stuff in it when
he has a cold but we wash out the eye or even remove it and clean it.
Sounds scary but it's just like changing a big contact lens.  Try and find
an ocularist as soon as possible.  You can contact ours.  His name is Dr.
Bruce Cook in St. Louis and he knows people all over the world who make
eyes.  His number is 314-567-7585.  With all the issues of GS, the eye is
easy to fix or at least look nice.

Good luck and let me know how it goes.

Synthea (mom to Samantha 6 and Bennett 5 with GS)


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-----Original Message-----
From: Trix M [mailto:FemaleCartman@...]
Sent: Friday, December 10, 1999 3:40 AM
To: Goldenhar@...
Subject: Thanks for the warm welcome and Happy Holidays!


Goldenhar Syndrome - http://i.am/bbds.page/
MERRY CHRISTMAS!!! HO HO HO!!! HAPPY NEW
YEAR!!!_____________________________________________________________________
_ To unsubscribe, write to Goldenhar-unsubscribe@... Start Your Own
FREE Email List at http://www.listbot.com/links/joinlb


Goldenhar Syndrome - http://i.am/bbds.page/

Hi,

I just wanted to say that since I have posted my message I have received
many nice posts in return and want to thank you for the warm welcome.

I am very sorry to hear of the problems that your children are having.
My problems can't even compare to the ones I have read about in the last
few days and now I almost feel foolish for complaining about them.

I can't tell you too much about GS, or about anything for that matter.
LOL  But I want you all to know that I am here to listen and give you
hope that I once was a small child with GS and now I am a happy,
functional, somewhat normal :) adult.  God bless and good luck.

Love Trixy




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-----Original Message-----
From: Bonnie Swary [mailto:bswary@...]
Sent: Friday, December 10, 1999 3:36 PM
To: Goldenhar Syndrome; Jo Turgeon; Valerie Wise; Valerie Reibe; Michael
Swary
Subject: [Fwd: Lovely Words of Wisdom]


Goldenhar Syndrome - http://i.am/bbds.page/





______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
Great price! The Toshiba Satellite 2100CDS is one of CDW.com's most popular
mobile computing solutions. At just 6.2 pounds, this 400MHz notebook
computer is a fantastic bargain at only $1199.85. <<Click here OR Follow the
link below>> for a full list of features.
http://www.listbot.com/links/cdw

  Lovely words of wisdom....

  Imagine there is a bank that credits your account each morning with
$86,400.
  It carries over no balance from day to day.  Every evening deletes whatever
part of the
  balance you failed to use during the day. What would you do? Draw out ALL
OF IT, of course!!!!

  Each of us has such a bank. Its name is TIME. Every morning, it credits you
with 86,400 seconds.
  Every night it writes off, as lost, whatever of this you have failed to
invest to good purpose. It carries over no
  balance. It allows no overdraft.

  Each day it opens a new account for you. Each night it burns the remains of
the day. If you fail to use the
  day's deposits, the loss is yours. There is no going back. There is no
drawing against the "tomorrow."

  You must live in the present on today's deposits. Invest it so as to get
from it the utmost in health, happiness,
  and success!  The clock is running. Make the most of today.

  To realize the value of ONE YEAR, ask a student who failed a grade.
  To realize the value of ONE MONTH, ask a mother who gave birth to a
premature baby.
  To realize the value of ONE WEEK, ask the editor of a weekly newspaper.

  To realize the value of ONE HOUR, ask the lovers who are waiting to meet.

  To realize the value of ONE MINUTE, ask a person who missed the train.

  To realize the value of ONE-SECOND, ask a person who just avoided an
accident.

  To realize the value of ONE MILLISECOND, ask the person who won a silver
medal in the Olympics.

  Treasure every moment that you have! And treasure it more because you
shared it with someone special,
  special enough to spend your time.  And remember that time waits for no
one.

  Yesterday is history. Tomorrow is a mystery.
  Today is a gift. That's why it's called the present!!!

  Friends are a very rare jewel, indeed.  They make you smile and encourage
you to succeed.
  They lend an ear, they share a word of  praise, and they always want to
open their heart to us.

  Send this to everyone you consider a FRIEND.
  If it comes back to you, then you'll know you have a circle of friends.

-----Original Message-----
From: The DesJardins Family [mailto:barjo@...]
Sent: Thursday, December 09, 1999 12:49 PM
To: Goldenhar Syndrome
Subject: Re: Hi, I am 23 years old and was...


Goldenhar Syndrome - http://i.am/bbds.page/

I am sorry it has taken so long to reply.  We got a new nurse and have gone
through lots of meetings and appointments lately.  I recently requested any
help from those who had experience with imperforate anus (born without the
hole to have a bowel movement).  At first the doctors thought she had one.
Then they said it was into her vagina, then they said it stopped short of
that.  The day after she was born she had a colostomy bag put on.  A few
months later when she was bigger they did the surgery to make a hole.  A
month after that they closed off the colostomy.  She has much pain daily and
is on meds to soften stool.  She has a heart condition, so she cannot drink
lots of water.  (Heart surgery is scheduled for spring)  Anyway, I am
desperate to find people ANYONE that knows about this.  The combination of
the two things is a dandy.  The local pediatrician suggested that we search
for info on Vater Syndrome.  Shauna seems to have anomalies to several
syndromes, but mostly fits in Goldenhar for now.  Do you have pain from
internal things or is it a surface situation?  I too wonder if Shauna will
be able to have children.  She apparently will have difficulty all of her
life.  The last doctor I asked said with imperforate anus the surgery itself
is a success for the hole, but there always seems to be a bigger problem
moving things through to eliminate.  I wish I understood how she feels and
what more to do.  Probably more than you wanted to know, but I need any help
from a person who knows how it feels.  Maybe this surgery is too recent of a
thing to have any adults that have gone through it.  I don't know.  If you
would like to comment on this in group or private e-mail please do.  Barbara
Jo (wife of Shaun, mom of Candice 19, Chris 18, and Shauna GS - just turned
1.  YEA!!!)
----- Original Message -----
From: Trix M <FemaleCartman@...>
To: <Goldenhar@...>
Sent: Monday, December 06, 1999 7:10 PM
Subject: Hi, I am 23 years old and was...


> Goldenhar Syndrome - http://i.am/bbds.page/
>
> Hi,
>
> I am 23 years old and was diagnosed with GS when I was a child. For the
> longest time I have felt like a freak because of my problems and until
> today was not aware that they were all related and caused by GS.
>
> When I was born I had two dermoids, one in my left eye and one in my
> right. The one in the right is not too bad and I can see out of it okay,
> but the one in the left was so severe it was covering almost my entire
> eye. They removed what the could when I was younger, but it never
> improved my sight in that eye so now I suffer from lazy eye in that eye.
> I am deaf in my left ear, have a trigger thumb on my left hand, which
> means it has no knuckle so I can't bend it. I also have two ribs fused
> together on my right side and vertebrae fused together somewhere in my
> neck. I also have something where my vagina and my rectum are or were
> when I was younger, too close together which made them fear I could not
> have or carry children. I had the skin tags to, but they removed those.
>
> I have always felt like a freak with my problems, and I know there are A
> LOT of people that have it worse than I do, but none the less I still
> feel bad about it at times. Today my mother finally explained to me all
> these problems where caused from this disorder. I would like to talk to
> anyone that suffers from this or that can relate to me, I have felt
> alone for so long, and today I feel there are others out there that can
> relate to me.
>
> A little advice for the parents of the children that have this problem,
> be honest with your kids. My parents were trying to protect me and not
> make me feel bad and not tell me everything, but in the long run they
> should have been totally honest from the start.
>
> Thanks for reading and please contact me with your thoughts.
>
>
> ______________________________________________________________________
> To unsubscribe, write to Goldenhar-unsubscribe@...
> ENTER TO WIN "THE ULTIMATE WORKSHOP"? from TOOL TERRITORY at sears.com.
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>


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-----Original Message-----
From: Bob Howse [mailto:howserb@...]
Sent: Wednesday, December 08, 1999 11:34 PM
To: Miles, Barb
Subject: Christmas


Goldenhar Syndrome - http://i.am/bbds.page/

Barb,

You wouldn't believe it but here in South Africa, women crochet all the time
and sell their stuff on the side of the road at little tables.  I buy
incredible tablecloths and bedspreads for about 200 Rand which is about $35
U.S.  I actually have to go to the craft market today and get two for
wedding presents.  Just be thankful your entire family does not revolved
around how many of those you turn out and sell a month.  My grandma crochet
so I can appreciate how much hard work goes into each stitch.  For your
mom's sake, I hope you are moving not to far away.  Good luck, Lynn.  It
could be worse, just ask my mom, because she could move to another continent
like Africa.  HA.

Sandy,

You wouldn't believe it but Bob and I went to college at SEMO so I know
right where East Prairie is.  Small world, huh.

Happy holidays to all!
Synthea (mom to Samantha 6 and Bennett 5 with GS)


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-----Original Message-----
From: Lynn Perlitz [mailto:sugarb@...]
Sent: Wednesday, December 08, 1999 7:51 PM
To: Goldenhar Syndrome Support Network
Subject: Fw: Trix and Sandy in OK


Goldenhar Syndrome - http://i.am/bbds.page/

Good luck with your upcoming surgeries Bennett
Our thoughts are with your whole family.
Just know you will come through this like the little trooper you always are.

Great Big Love & Hugs & Kisses
Little Sara's Grandma

----- Original Message -----
From: "Bob Howse" <howserb@...>
To: "Miles, Barb " <goldenhar@...>
Sent: Tuesday, December 07, 1999 11:18 PM
Subject: Trix and Sandy in OK


Goldenhar Syndrome - http://i.am/bbds.page/

Trix,

Welcome to the group.  We, the parents of young GS kids, have a lot to gain
from the experience of you adults.  So glad you found the group.  Some times
it's nice just reading about what's going on with everyone else and other
times something just hits home and you can really FEEL how someone else is
feeling.

Sandy in OK<

Your family is super!  Being originally from St. Louis, I have to say your
husband resembles Mark "Big Mac" Maguire.  Has anyone ever said that?  The
boys are cute and I think you're going to have big phone bills in the next
year or two with the oldest one.  Most of all, you seem like a happy family
which is what counts.  Happy holidays.

Barb and the rest of the group,

Please say a prayer for Bennett (again) because we are traveling back to the
States Saturday for a VNE/SVF test on Tuesday and then surgery on Thursday
the 16th for his soft pallet.  The doctors said it will be as uncomfortable
as having his tonsils out which didn't bother Bennett a bit.  When he
woke-up from that one, he at three bags of salty potato chips.  He's glad
his ribs won't be hurting.  We're running out of those anyway with three
gone.  I guess we should have named him Adam.  Ha.  Safe travels to all
those over the holidays.

Synthea (mom to Samantha 6 and Bennett 5 with GS)


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-----Original Message-----
From: SwtSand@... [mailto:SwtSand@...]
Sent: Wednesday, December 08, 1999 6:59 PM
To: Goldenhar@...
Subject: Re: Trix and Sandy in OK


Goldenhar Syndrome - http://i.am/bbds.page/

Yes we have heard it alot..He does look like "Big Mac" we have actually had
people come up and asked for his autograph or comments about baseball.
My hubby is from alittle town named East Prairie Missouri it's about 2 hours
away from Saint Louis.
Thanks for the nice comments about my family.
I like them I tend to be alittle partical.

Happy Holidays

Sandy


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-----Original Message-----
From: Barb Miles [mailto:miles28@...]
Sent: Wednesday, December 08, 1999 1:17 PM
To: *Goldenhar Syndrome List
Subject: Behind in my mail, so here are my responses


Goldenhar Syndrome - http://i.am/bbds.page/

A big Welcome to Trix,
As you have no doubt seen over the last few days, we are like one great big
family and we care for all. With over 125 members in our group we cover
almost every area of Goldenhar Syndrome possible, and we always have kind
words, prayers and thoughts of each other ready. You're in great company,
and i hope you enjoy being a part of our family.

Synthea and Bennett
As always you will be in my thoughts. Bennett, you might think better of the
salty potato chips though, the thought of it made me cringe. Lots of Love
and Hugs Sweetie, you've been through a lot, but you are one very lucky boy
to have such a great family to take care of you.

Everyone,
I've been really busy here (as always). Our family is all geared up for
Christmas, with me crochetting up a storm of presents. (Boy is mom (Lynn
Perlitz, aka Sara's Grandma) lucky I love her so much, this table cloth is a
pain to design. Yup she knows about it.)
This past couple months have been very stressful for our family, Scott has
gone through a dry spell in work and is getting ready to take a job for the
school board on the 13th. With this job comes a move, but I will keep you
all posted as to when I will be offline. Mom will take over for me while I'm
away.
Sara's doing great in her "schooling" she's come a long way. I definately
recommend a program where your child is in a classroom type atmosphere while
they are recieving thier different types of therapy. (Health permitting, of
course.) Sara's speech has improved a great deal in the past 3 months, and
her vocabulary is expanding in leaps and bounds.
She's jumping and running (not too fast yet) and hopping, and even trying to
skip rope. (This can't be my kid!?)
As for fine motor skills, she's developing a great grip with her pollicizied
thumb and is still switching hands for different jobs. (Writes left handed,
but draws with her right hand.)
Sara's last home visit proved to be very infomative for me. We now have the
company to contact for a special pair of sissors (left or right handed) that
will help her with the opening action of cutting.
This pair of sissors has a plastic half loop connecting both grips of the
sissors which works like a spring in helping to automatically open the
sissors after cutting.
Anyone interested can contact me for information regarding these sissors.
They are called Loop sissors and are approximately $10.25 for the rounded
tip pair.

A Merry Holiday Season to you all.

Hugs of Support and Understanding,
Barb Miles
(mother to Sara, 4 years old with Goldenhar Syndrome)

Goldenhar Syndrome Support Network http://i.am/bbds.page
Help Raise money for Goldenhar Syndrome Support Network at iGive.com
http://www.iGive.com/html/ssi.cfm?cid=2696&mid=13537


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-----Original Message-----
From: Abest32@... [mailto:Abest32@...]
Sent: Thursday, December 02, 1999 7:40 PM
To: Goldenhar@...
Subject: Re: A final word


Goldenhar Syndrome - http://i.am/bbds.page/

This is obviously a very heated topic and certainly a disturbing issue, to
say the very least.  Instead of further propelling this topic by giving you
my personal rantings of how absolutely cruel and sad I think this man must
be....anyone interested in more information might can check out these web
sites.

http://www.princeton.edu/pr/president/98/981202.html

http://www.academia.org/singerquotes.html

Ashley
Aunt to Dylan, 19 mos, GS


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-----Original Message-----
From: Lynn Perlitz [mailto:sugarb@...]
Sent: Friday, November 26, 1999 10:27 PM
To: Goldenhar Syndrome Support Network
Subject: Fw: goldenhar angels jackie hensel bitt_mom@e


Goldenhar Syndrome - http://i.am/bbds.page/

Jackie
You made it through all this and you are still with us.  That is a very good
sign of your strength and determination.

Congratulations.

Be honest with Patty about what will be happening.  You don't have to give
her details but she deserves to be told.  To not tell her would be like
lying to her and she could feel betrayed by the one person she trusts most
in the world.

When she goes in to the hospital, be there for her as her strength and
support.

Good Luck and hopefully no more shakers.

Love & Hugs & Kisses
Little Sara's Grandma

----- Original Message -----
From: "Barb Miles" <bbds.page@...>
To: "*Goldenhar Syndrome List" <Goldenhar@...>
Sent: Friday, November 26, 1999 1:07 PM
Subject: FW: goldenhar angels jackie hensel bitt_mom@e


> Goldenhar Syndrome - http://i.am/bbds.page/
>
>
>
> -----Original Message-----
> From: Jackie Hensel [mailto:bitt_mom@...]
> Sent: Friday, November 26, 1999 2:40 AM
> To: Barb Miles
> Subject: re: goldenhar angels jackie hensel bitt_mom@e
>
>
> dear barb,im so happy to hear from you!!!! i would really like to be able
to
> talk to someone or everyone about my angels sergery. its coming up like
the
> next two months or so ,it depends on when i get her mri done. i was sent
to
> calf. recently to get it done and they were not properly prepared a
possible
> mh
> problem so it was cancelled out. in the mean time patty and i were
sleeping
> in our little motel room in la and about 3:00 am the bed stasrted moving
and
> the windows started shaking ,i looked out the window and the cars were
> bouncing around!!! yep you guessed it we were in that earthquake !!  i
swear
> if it isnt bad enough my whole would had just collasped around me with my
> husband leaving me for a girl half my age and pattys doctors yelling
sergery
> i had to be in a earthquake!! i really dont know how ive survived not
> haveing a nervous breakdown. i guess because
>
> of my baby girl who needs me and my strength. im curious to know how do i
> start prepareing patty for this operation? she depends on me to not let
> nothing hurt her ,how can i let her down by letting them cut on her?
please
> help me .
> bitt_mom@... jackie hensel
>
> -----------------------------------------------
> FREE! The World's Best Email Address @email.com
> Reserve your name now at http://www.email.com
>
>
> ______________________________________________________________________
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-----Original Message-----
From: Abest32@... [mailto:Abest32@...]
Sent: Wednesday, November 17, 1999 11:28 PM
To: Goldenhar@...
Subject: Re: Hello...


Goldenhar Syndrome - http://i.am/bbds.page/

Janice,
How did everything go in Seattle with your son?

Thanks so much for the referrals for Laurie and Dylan (GS).  I will forward
the info on Seattle Children's Hospital tomorrow (by snail mail -- I can't
wait until she and her husband have a computer/internet!).

Thanks again,
Ashley (Aunt to Dylan, 18 mos, GS)


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-----Original Message-----
From: Tossan Orebro [mailto:offa71@...]
Sent: Tuesday, December 07, 1999 1:18 AM
To: Goldenhar@...
Subject: Re: Hi, I am 23 years old and was...Trix


Goldenhar Syndrome - http://i.am/bbds.page/

Hello Trix!

I´m happy to see your letter! You know, I have a eight years old son with
GS. One of my fears has been that he never will be adult. You are for me a
good sign that he will manage...

Please, write directly to me so I can tell you more of my son..

Big hug!
Eva from Sweden


>From: FemaleCartman@... (Trix M)
>Reply-To: "Goldenhar Syndrome" <Goldenhar@...>
>To: Goldenhar@...
>Subject: Hi,  I am 23 years old and was...
>Date: Mon, 6 Dec 1999 22:10:00 -0500 (EST)
>
>Goldenhar Syndrome - http://i.am/bbds.page/
>
>Hi,
>
>I am 23 years old and was diagnosed with GS when I was a child. For the
>longest time I have felt like a freak because of my problems and until
>today was not aware that they were all related and caused by GS.
>
>When I was born I had two dermoids, one in my left eye and one in my
>right. The one in the right is not too bad and I can see out of it okay,
>but the one in the left was so severe it was covering almost my entire
>eye. They removed what the could when I was younger, but it never
>improved my sight in that eye so now I suffer from lazy eye in that eye.
>I am deaf in my left ear, have a trigger thumb on my left hand, which
>means it has no knuckle so I can't bend it. I also have two ribs fused
>together on my right side and vertebrae fused together somewhere in my
>neck. I also have something where my vagina and my rectum are or were
>when I was younger, too close together which made them fear I could not
>have or carry children. I had the skin tags to, but they removed those.
>
>I have always felt like a freak with my problems, and I know there are A
>LOT of people that have it worse than I do, but none the less I still
>feel bad about it at times. Today my mother finally explained to me all
>these problems where caused from this disorder. I would like to talk to
>anyone that suffers from this or that can relate to me, I have felt
>alone for so long, and today I feel there are others out there that can
>relate to me.
>
>A little advice for the parents of the children that have this problem,
>be honest with your kids. My parents were trying to protect me and not
>make me feel bad and not tell me everything, but in the long run they
>should have been totally honest from the start.
>
>Thanks for reading and please contact me with your thoughts.
>
>
>______________________________________________________________________
>To unsubscribe, write to Goldenhar-unsubscribe@...
>ENTER TO WIN "THE ULTIMATE WORKSHOP"? from TOOL TERRITORY at sears.com. The
>Grand Prize Winner receives $17,500 worth of tools. Five other First Prize
>Winners will receive $2000 worth of tools each. Click to enter
>http://www.listbot.com/links/sears1. See site for official rules.


______________________________________________________________________
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-----Original Message-----
From: Trix M [mailto:FemaleCartman@...]
Sent: Tuesday, December 07, 1999 2:48 PM
To: Goldenhar Syndrome
Subject: Re: Hi, I am 23 years old and was...


Goldenhar Syndrome - http://i.am/bbds.page/
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Goldenhar Syndrome - http://i.am/bbds.page/




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