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DJ

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Been there, done that...

Posts: 721
Wichita, KS
Gender: male

Daphne's video from Discovery Health
Jan 11^th, 2006 at 1:48pm

I've made the show from the Discovery Health Channel into a downloadable video for those of you who weren't able to watch it (or tape it).

It's a 17MB file so it is important to download it to your hard drive and watch it from there. High speed connections are a definite plus for this one! Wink

You will also need Windows Media Player to watch the video.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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« Last Edit: Jan 12^th, 2006 at 12:38pm by DJ »

Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!

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Jack New Poster Offline Posts: 25 Kneeland, USA, usa, 16, 108, CA, California Gender:	Re: Daphne's video from Discovery Health Reply #1 - Jan 11^th, 2006 at 3:54pm Another great job, Deej! The board is such an incredible resource for the MM community! Thanks again! Jack
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tiomasai Experienced Poster Offline Arriba Arriba! Posts: 246 Queens, NY, Gender:	Re: Daphne's video from Discovery Health Reply #2 - Jan 11^th, 2006 at 9:01pm Thanks so much DJ! I still haven't found any one around me to tape the show, since no one seems to have DISCOVERY HEALTH!!, so this helps a bunch. Trina
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Shan Old-Time Poster Offline MM Survivor ~ May 27, 2005 Posts: 849 Honolulu, USA, usa, 376, 346, HI, Hawaii Gender:	Re: Daphne's video from Discovery Health Reply #3 - Jan 11^th, 2006 at 9:41pm YOU'RE AWESOME, DJ!!!! As always.... Thank you! Shan
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Seachelles Old-Time Poster Offline God never gives us more than we can handle. Posts: 681 Fredericksburg, USA, usa, 474, 157, VA, Virginia Gender:	Re: Daphne's video from Discovery Health Reply #4 - Jan 12^th, 2006 at 11:23am Also, for those going to Princeton, I will be bringing the DVD with me along with my portable DVD player. Michelle
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Lilian Junior Poster Offline Posts: 99 Leiden, Netherlands, europe, 222, 235 Gender:	Re: Daphne's video from Discovery Health Reply #5 - Jan 12^th, 2006 at 1:33pm thank you so much!!! I am so happy I can watch the video!!
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AllyssasMommy New Poster Offline Allyssa Dx With MM on 3/03 She Is 8 & Doing Great Posts: 4 Kissimmee, USA, usa, 462, 284, FL, Florida Gender:	Re: Daphne's video from Discovery Health Reply #6 - Jan 13^th, 2006 at 9:19am Thank you so much! All I did was cry while watching it. The story was so touching and it brought alot of memories of what we went through also. God Bless Daphne and all of our moyamoya families.
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LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Daphne's video from Discovery Health Reply #7 - Jan 17^th, 2006 at 5:59pm DJ~ Thanks for making Daphnies vidio available. It will help spread the word about mm to those who didn't see it on TV. Daphnie is an adorable and strong 'ambassador' re: moyamoya. Thanks again, Linda A. (wife of Jack B.!)
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patch Junior Poster Offline Posts: 51 NEWCASTLE, Australia, australia, 325, 238, NSW, New_South_Wales Gender:	Re: Daphne's video from Discovery Health Reply #8 - Jan 17^th, 2006 at 8:07pm DJ God bless you ! This show was not available in Australia - I even had a friend of a friend in the US trying to record it. Thankyou ! Helene
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karen7493

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I love YaBB 1G - SP1!

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Glen Allen, USA, usa, 478, 160, VA, Virginia

Re: Daphne's video from Discovery Health
Reply #9 - Jan 17^th, 2006 at 10:23pm

THIS SHOW WAS SO AMAZING! I WAS SHOCKED AT THE SIILARITIES BETWEEN DAPHNE AND MY BRANTLEY. THEY EVEN LOOK ALIKE! IT REALLY TOUCHED MY HEART, AND ECHOED SO MANY OF THE FEELINGS I HAVE HAD ALL THESE YEARS. UNTIL NOW, I ALWAYS FELT COMPLETELY ALONE IN THIS! I WOULD LOVE TO TALK TO JENNY. AND ANY OF YOU FOR THAT MATTER. I AM SENDING SOME PICTURES FOR THE GALLERY OF BRANTLEY GROWING UP, AND NOW. HE HAD HIS SURGERY IN BOSTON BACK IN 1984, WHEN IT WAS CONSIDERED "EXPERIMENTAL". GOD BLESS ALL OF YOU. I AM SO GLAD I SAW THAT SHOW, AND FOUND THIS WEBSITE!!!! Cheesy

karen7493, Brantley's mom

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emma New Poster Offline Diagnosed with MM Oct 2004 Posts: 29 melbourne, Australia, VIC, Victoria Gender:	Re: Daphne's video from Discovery Health Reply #10 - Jan 19^th, 2006 at 7:31pm Thanks DJ That was amazing to watch!! And what a brave little girl! Thanks again to all of the effort you put into this web site! Cheers Emma
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tiomasai Experienced Poster Offline Arriba Arriba! Posts: 246 Queens, NY, Gender:	Re: Daphne's video from Discovery Health Reply #11 - Jan 19^th, 2006 at 9:49pm Jenny: I just have to say kudos to you and your family for having the strength to persevere...I finally saw the video today and my mother and I were both in tears. You and your family, and especially Daphne, are in my thoughts, always. Hugs, Trina
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feather

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I love YaBB 1G - SP1!

Posts: 1
H, USA, TX, Texas

Re: Daphne's video from Discovery Health
Reply #12 - Jan 19^th, 2006 at 10:12pm

HI Im new
My daughter has been having what looks like seizures (eyes going back and forth or shaking /with both her arms stiffly outstretched to the sides) since about 3 weeks of age. She is now 3 months. We went to a neurologist and were told it was reflux. Randomly I was flipping the channels and saw Daphne onscreen doing exactly what my daughter does. I started watching the show expecting it to say that she had a reflux disorder called Sandifer syndrome like my daughter but instead it said Moya Moya.

Her episodes are not always related to eating and reflux medicine has not changed them. The neurologist told me not to come back and see him

I am very concerned about my duaghter. Does anyone have any suggestions. (FYI my daughter has a chromosomal abnormality as well)

Thank you

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Seachelles

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God never gives us more
than we can handle.

Posts: 681
Fredericksburg, USA, usa, 474, 157, VA, Virginia
Gender: female

Re: Daphne's video from Discovery Health
Reply #13 - Jan 20^th, 2006 at 6:34am

Feather,

I am so sorry to hear about your daughter. I am glad you saw Daphne's story on the Discovery Health channel. You seeing that show may just save your daughter. You have come to the best site for information and support. I would suggest that you read as much as you can on here as knowledge is power, in my opinion.

I am outraged that your neurologist told you not to come back. It sounds like he's not a very good neurologist IMO. So.....don't go back to him. Seek more help. Has your daughter had a MRI/MRA? I would suggest that you seek Dr. Steinberg or Dr. Scott's help. Dr. Steinberg is in CA and Dr. Scott is in Boston. Both are very good moyamoya specialists. Both of these doctors' information is on this site. And they will accept emails and get back to you quickly. However, if your daughter has not had an MRI/MRA, then further testing will be ordered in order to give a definite diagnosis.

Please ask questions and people will definitely help you with information, facts, and support. We are here to help and you have come to a big family here.

I will keep your daughter and your family in my thoughts and prayers.

Hugs,
Michelle

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Michelle

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kotipup

Experienced Poster

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: Daphne's video from Discovery Health
Reply #14 - Jan 20^th, 2006 at 5:41pm

Feather,

I wanted to let you know that I sent you a private message. I, too, am upset that your neurologist brushed your daughter off, and left you without any help. I also wanted to make sure that you knew that seizures can be caused by MANY things, besides moyamoya disease. No matter what the underlying cause, though, seizures should be investigated and treated. I hope my private message to you gives you some ideas on where to turn.

You and your daughter are in my thoughts.

Jenny

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MGG New Poster Offline I love YaBB 1G - SP1! Posts: 6 Port of Spain, Trinidad_Tobago	Re: Daphne's video from Discovery Health Reply #15 - Jan 26^th, 2006 at 4:48am Hi, THank you for posting up the video. I wasn't able to see the programme as I don't have cable. Thank GOd for your persistence as parents. That was really good advice that you gave- persevere until you find someone who can help your child. God bless you all, + Maria.
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CarasMOM

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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female

Re: Daphne's video from Discovery Health
Reply #16 - Jan 27^th, 2006 at 10:36am

DJ....thank you for the email that you sent me to let me know about the program which I would have never known....thought it was interesting way to reach those of us who haven't posted in a while....for a second I was afraid I was being cut off due to not posting but was touched that you were letting me know that Daphne was going to be on TV. Cheesy

. Gosh I miss you all !!!

I was able to watch it and Cara, too (briefly)..some parts made her close her eyes though...while its a mystery to many....it is a major part of everyones lives thats part of this website.

Tight hugs, carol

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Warm Hugs and Prayers, CarasMOM (Carol)

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