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!   ;)  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

[smiley=headbanger.gif]

Another great job, Deej! The board is such an incredible resource for the MM community! Thanks again!

Jack

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

YOU'RE AWESOME, DJ!!!!  As always....

Thank you!
Shan

Also, for those going to Princeton, I will be bringing the DVD with me along with my portable DVD player.  

Michelle

thank you so much!!!
I am so happy I can watch the video!!

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.

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.!)

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

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!!!!   :D        karen7493, Brantley's mom  

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

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

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

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

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

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.

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.  :D.  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