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Daphne's television debut date (Read 16456 times)

kotipup

Experienced Poster

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My daughter, Daphne, has
Moyamoya

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

Daphne's television debut date
Dec 22^nd, 2005 at 1:07pm

Hi... I just wanted to let everyone know that we got an air date for Daphne's story on "Mystery Diagnosis":

The title of the episode is "A Puff of Smoke" and it will air on the Discovery Health Channel on Monday, January 9th at 10pm. You can check for other broadcasts on the Discovery Health Channel website:
http://health.discovery.com/tvlistings/series.jsp?series=112261&gid=0&channel=DHC

For anyone who has no idea what I'm talking about (it's been awhile since I posted!)... my two year old daughter, Daphne, was diagnosed with MM this past January after suffering two strokes. She was sent home on hospice care - doctors told us there was nothing we could do for her - but she had bilateral surgeries at Stanford this March and has been making a slow, but steady recovery. The Discovery Health Channel will be featuring her story as part of its new "Mystery Diagnosis" series.

Anyway, I just wanted to post a note, since there were a lot of people who'd told me they wanted to know when it would air.

Jenny

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Lore MM.com Benefactor Offline My brother Kevin (Cubbie) has Moyamoya Posts: 819 Delaware, USA, usa, 419, 133, OH, Ohio Gender:	Re: Daphne's television debut date Reply #1 - Dec 22^nd, 2005 at 2:08pm Hi Jenny, I was wondering the other day when Daphne's story would air. Thanks for letting us know about Daphne's story air time. I will definately watch the episode on January 9th. Merry Christmas, Hugs, Lore
Back to top	"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson IP Logged

gotchlorine Old-Time Poster Offline Our daughter, Tara, lives with MM Posts: 776 San Jose, USA, usa, 24, 158, CA, California Gender:	Re: Daphne's television debut date Reply #2 - Dec 22^nd, 2005 at 3:07pm Awesome news, Jenny! We too were wondering about the air date, and will definitely be watching on the 9th! I know this Christmas will be a very special one for your family . . . enjoy! , Jill
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Mar Ex Member	Re: Daphne's television debut date Reply #3 - Dec 22^nd, 2005 at 5:00pm Thanks Jenny!! I can't wait to see it. Will definately be watching. Hugs to Daphne. Have a blessed holiday. Mar
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DJ YaBB Administrator Offline Been there, done that... Posts: 721 Wichita, KS Gender:	Re: Daphne's television debut date Reply #4 - Dec 22^nd, 2005 at 11:04pm That's AWESOME Jenny! I will definitely DVR the show and make sure everyone I know gets to see it! YAHOO!!! ;
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Nancy_N. Old-Time Poster Offline My daughter Mandy Has Moyamoya Posts: 664 Jasper, USA, usa, 436, 230, GA, Georgia Gender:	Re: Daphne's television debut date Reply #5 - Dec 22^nd, 2005 at 11:35pm Fantastic I truley believe that someday the word will really be out all the way....I can't wait, things like Daphne's story and other little interviews and articles is our start, this is real T.V. though awesome. Can't wait will spread the word. Nancy
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: Daphne's television debut date Reply #6 - Dec 23^rd, 2005 at 8:50am Awesome, Jenny! I'm very excited to see it! I've marked my calendar and will be spreading the word! -Shari
Back to top	A smile is contagious...start an epidemic! Dr. Scott did my surgeries - 12/29/03 and 1/5/04 IP Logged

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 television debut date Reply #7 - Dec 23^rd, 2005 at 11:41am This is absolutely wonderful news, Jenny! I will definitely be watching and will TIVO it as well. Hugs to Daphne! Happy Holidays to you and you family! Michelle
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cass/kate

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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female

Re: Daphne's television debut date
Reply #8 - Dec 23^rd, 2005 at 9:02pm

Jenny -

I can hardly wait to see the special Jan. 9. Is that 10pm EST? I just e-mailed Andrea Smith at Stanford because I had not heard anything from her yet. As you probably know, our daughter Kate had her first surgury by Dr. S on September 7 and 20 min of her by-pass surgery was filmed by Discovery Channel. We were told that her "brain" would be on the proggram about Daphne, to demonstrate the actual procedure on a real mm patient. I just think it is SO wonderful that the information is finally getting our on a larger scale so that eventually, many more people will not have to go through what y'all did, or what we did (three years of mis-diagnosis. YEAH !!

Hugs and a Wonderful Christmas and New Year !

Cass, Kate and Jon in Texas Smiley

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Emily Senior Poster Offline Diagnosed Oct 2005. Direct bypasses: Nov 05 Apr 06 Posts: 259 Brisbane, Australia Gender:	Re: Daphne's television debut date Reply #9 - Dec 24^th, 2005 at 7:41am WOW... that's awesome!! can someone please keep the aussies updated about how the show goes... whgat they say.. details, etc... cheers oh and merry christmas! it's about 2 hrs till Dec 25 over here.. woo
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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Daphne's television debut date
Reply #10 - Dec 24^th, 2005 at 11:29pm

Jenny,

Thanks for letting us know! I'll be sure to let my family and friends know too! Thank you, in advance, for continuing to share Daphne's story! It is through people like you who are willing to get out there and spread the word about this "rare" disease that we will be able to raise awareness.

Please give Daphne a big hug from us....She is one tough cookie! Smiley

Happy Holidays,
Shan

« Last Edit: Dec 24^th, 2005 at 11:29pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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riosdallas Junior Poster Offline Life is an Opportunity That we benefit from Posts: 63 Templeton, USA, usa, 510, 83, MA, Massachusetts Gender:	Re: Daphne's television debut date Reply #11 - Dec 28^th, 2005 at 9:52am Hi Jenny, That's terrific....to be able to get Daphne's story out there. So, that you can help others and bring awareness to this disease. It's exciting!!!!!!!! Lena.......
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Greg-NJ1

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Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

Re: Daphne's television debut date
Reply #12 - Jan 4^th, 2006 at 10:52am

Jenny,

I can't wait to see the show and neither can my coworkers. Now that I have been officially diagnoised, I shared my diagnosis with a 1/2 dozen very close co-workers. They are all interested in learning about MM so, I gave them this web site AND the information about the show on Monday.

Thank you and your family for helping pass the word about MM.

Regards,
Greg

I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery.

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cherylb New Poster Offline I love YaBB 1G - SP1! Posts: 47 staten island, NY, New_York Gender:	Re: Daphne's television debut date Reply #13 - Jan 4^th, 2006 at 12:57pm Excellent news, finally our story wil be heard. I can't wait to see the show. cheryl
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Mar Ex Member	Re: Daphne's television debut date Reply #14 - Jan 8^th, 2006 at 1:41pm Bump... Tomorrow, I'm excited! Just a reminder...
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Roni Junior Poster Offline I love YaBB 1G - SP1! Posts: 52 Dillon, USA, usa, 195, 162, CO, Colorado Gender:	Re: Daphne's television debut date Reply #15 - Jan 8^th, 2006 at 6:03pm Good news about the Discovery Channel coverage of MM. I do not find the program listed in the Denver TV guide for tomorrow. Any clues? Thanks Roni rolsen64@aol.com
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Greg-NJ1 Experienced Poster Offline Mis-diagnosed with MM in 2005, arterial restricion Posts: 248 Teaneck, NJ Gender:	Re: Daphne's television debut date Reply #16 - Jan 8^th, 2006 at 6:36pm Roni, Make sure that you are looking for the Discovery HEALTH chanel and not the everyday Discovery chanel, as they are two different chanels. I just checked the Discovery Health web page and the show is listed for tomorrow night. The show title is "Puff of Smoke" or something similar. Regards, Greg
Back to top	I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery. IP Logged

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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 television debut date Reply #17 - Jan 9^th, 2006 at 3:14am I've emailed my friends and family....and can't wait to see it!!!! Thank you, again, Jenny for doing this!!!! ; Raising awareness is the key...and Daphne is such an inspiration! Thanks, Greg, for clarifying and differenciating between the 2 Discovery Channels. We definitely wouldn't want to miss this! Aloha, Shan
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Roni Junior Poster Offline I love YaBB 1G - SP1! Posts: 52 Dillon, USA, usa, 195, 162, CO, Colorado Gender:	Re: Daphne's television debut date Reply #18 - Jan 9^th, 2006 at 8:33am Thanks Greg! Duh - I was looking for the wrong Discovery channel. Thanks! Roni
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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: Daphne's television debut date
Reply #19 - Jan 9^th, 2006 at 10:00am

Thanks Mar for bumping Daphne's air time for January 9th post.

I noticed on my Discovery Channel Health station that this story will air at 10:00 P M (EST) and again at 1:00 AM (EST) and again at another time the next afternoon. Just wanted to mention this so others who are interested in watching can look at their local time to determine if it runs multiple times and into the next day just in case they are unable to catch it the first go around.

I am taping the show and am excited about watching it!

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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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 television debut date
Reply #20 - Jan 9^th, 2006 at 11:35am

We had our family reunion yesterday, and I told everyone about it. Gave them the exact times listed on the Discovery Health's website in case they couldn't catch it tonight.

I also took Shane's portable DVD player with us to the reunion so we could show the Stanford CD-Rom on Moyamoya and the Stanford moyamoya pamphlet.

I am so excited about the show as well tonight. Shane will be working, but I'm going to wait for him to get home so we can watch it together. I hope I'm able to stay awake!!!

Michelle

Michelle

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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 television debut date
Reply #21 - Jan 9^th, 2006 at 7:42pm

I do some work for a company that is owned and founded by a friend of mine. The company is called AirCheck and they tape shows that come on tv or radio. I just spoke with him and asked if I could get a copy of this show tonight on DVD. Hey checked it out and said that it would be no problem. I asked him what it would cost me and he said nothing. I guess it's true in what they say that it's all about who you know. LOL! So....when I get it, I should be able to burn it when needed. I'm sure he will send it to me Fed-Ex, but if not, I should have it by the end of the week.

Michelle

Michelle

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Mar

Ex Member

Re: Daphne's television debut date
Reply #22 - Jan 9^th, 2006 at 10:50pm

Jenny,

I just saw the airing, and all l I can say through the tears is, God love ya's! I don't know how you did the research and went through all that you did. I'm lost for words right now. You all are truly amazing. I admire and respect you more than you'll ever know, and you're precious li'l Daphne will forever be in my heart and prayers.

Thank you for sharing your story with us. I'll never forget it.

God Bless,
Mar

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Helenor New Poster Offline Posts: 23 Folsom, USA, usa, 35, 148, CA, California Gender:	Re: Daphne's television debut date Reply #23 - Jan 10^th, 2006 at 12:28am After recieving the email, I rushed down to the tv. However, I found out that my parents recently cancelled Discovery Health. I convinced my father to resubcribe just in time. For me, it'll be on in 30 minutes. I can't wait to see it!
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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: Daphne's television debut date
Reply #24 - Jan 10^th, 2006 at 7:23am

Hi Jenny,

I just wanted to let you know I saw Daphne's story last evening and I cried as I watched what Daphne endured as a result of MoyaMoya and what you and your husband went through until you reached Dr. Steinberg at Stanford.

Thank you so much for sharing Daphne's story and bringing attention to MoyaMoya to a national audience.

I remember when I posted about Kevin having rapid eye movement and you immediately answered my post and was so knowledgeable about the rapid eye movement. Now I know why. When I saw little Daphne's rapid eye movement, that is exactly what Kevin experienced.

It was a wonderfully presented story. I have to tell you when I saw you dancing with Daphne in your arms I too got up and danced with you.

May God continue to richly bless you and your husband and Daphne. Daphne is so sweet and precious. She is a gift from God and a miracle of survival.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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