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-   -   The Maury Show (http://birthmark.org/board/showthread.php?t=983)

Seanette 10-15-2004 10:01 PM

The Maury Show
 
Hello,

I tried sending a post but accidentally sent myself an e-mail...

Anyway, I wanted to share that my daughter, Alexandra Smith was on The Maury Show today. She has venous malformations on the her face, neck, mouth and intracranial. She's had 32 surgeries to help correct this birth defect.

Alex was a guest for, "Children Born With Rare Disorders". Hank was on the show too. Unfortunately for Hank... the show was a disappointment because of the editing. They did a quite bit of editing on Alex's segment too and in fact edited anything we mentioned about God or any mention about her wonderful surgeon (Dr. Waner). The show for us was a very positive experience. As Alex's mom I have prayed for the day where Alex could stand out in the public in a positive way. She's been made fun for most of her life and today.....she was portrayed as the shining star that she is. Truly one of her best days and for her family.....unforgetable.

I pray that the show will touch many lives and will let other children born with vascular birthmarks know how wonderfully special they truly are.

Sincerely,
Seanette Smith

nickbar 10-16-2004 12:36 AM

Re:The Maury Show
 
she was such an angel. She is beautiful!!!!!!!!!! She made me smile (and cry). I know how hard it is to be the mother. We want the best for our children...if they hurt, we hurt. You did a fabulous job telling the world how love is the most important thing. I am so sorry the cut the parts about WHAT GIVES US THE MOST SUPPORT AND HOPE...our faith. THey do know about Dr. Waner now...hopefully if they receive any calls or emails about how to get help...they will inform them of this site, Drs we know are helping kids, and support groups.

HUGS to you for sharing her story. AND bringing awareness to vascular birthmarks.

Corinne

Seanette 10-16-2004 12:55 AM

Re:The Maury Show
 
Corinne,

Thank you for sharing this wonderful experience with us :0). It's just been a wonderful day full of joy, happiness and excitement that my precious daughter was portrayed as the shining star she is.

I know that all children born with vascular birthmarks are beautiful and pray that God blesses each and every one. I've cried more today than the day she was born...but tears of joy. I've prayed since Alex was a baby that God would do something "big" to show Alex just how special she is and that He would give her that moment in life where she would stand out in a positive way.

I'm sure that most of you can relate to all of the awful and hurtful remarks and today....erased just a portion of that pain for Alex, for myself and for so many others that can relate.

Many Blessings,
Seanette

hankbartenbach 10-16-2004 02:15 AM

Re:The Maury Show
 
Hi Seanette,

Your daughter did do a great job on the show.
It was like she was a natural at it, and so where you.
It was great to meet her that Thrusday in NY.
I hope you had a great time in NY while you where there.
That does not suprise me that they took out the part when you two where talking about Waner and God.
They took out everything I talked about dating and relationships. I did not answer the questions the way they wanted me to. Truthfully.

I meet Waner on Monday, he is a great man.

Have a great day.

Hank

Seanette 10-16-2004 02:21 AM

Re:The Maury Show
 
Hank,

I'm sorry that things did not go as well for you...but I have to tell you that you've blessed me and my family. In fact I think of you often and pray that God is blessing you.

Your an amazing young man and I know that God has "BIG" plans for you!!

I'm thrilled that you've met Dr. Waner and I promise you that he will help change your life.

I'm here if you ever need a friend and it was such a pleasure to meet you.

**Big Hugs**
Seanette

hankbartenbach 10-16-2004 05:47 PM

Re:The Maury Show
 
Seanette,

Life moves on I will not let Maury hold me down, atleast I made a good inpretion on the Nation as well is Alex.

I am having a guy here in CO edit Geoff's show, and I am going to add Alex and I to it. There will be now one else from either shows, or any comercals on the tape.
As people I know are on shows they will follow on the tape and DVD I am having made. If you want a copy let me know when I get it all done I will add you to a list of people that already wants a copy. and will let you know how much it will cost.
Because of the copy right issues I can not make profits on it, and I really do not need to. I will keep you posted.

Hank

Seanette 10-16-2004 10:13 PM

Re:The Maury Show
 
Hank,

I would love a copy...please keep me posted :0). I'm happy to hear that you're not going to let it bring you down and I hope you remember how much you really have impacted the nation. Like my Alex, your an inspiration to all of us.

God Bless,
Seanette Smith

SHELLEY&ZACH 08-07-2008 02:23 PM

Seanette,

My son Zachary has a venous malformation that engulfs the left side of his face. He is currently being treated at Arkansas Children's Hospital under the care of Dr. Buckmiller and Dr. James. He has undergone eight laser treatments and four venous sclerotherapy procedures since 2004. His malformation has been growing faster than we can seem to control it. In May we learned that he will need an excision surgery. He is currently scheduled to undergo this procedure in October. My family told me about your appearance on Maury. They instantly fell in love with your daughter, and saw a lot of Zachary in her. I would love the opportunity to get a chance to talk to you and learn more about your experiences. Thanks!


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