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kotipup

Experienced Poster

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My daughter, Daphne, has
Moyamoya

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

Daphne is in the news today
Jun 21^st, 2005 at 10:19am

Hi, I just wanted to let everyone know that the news article about Daphne was printed today. Here is a link:

http://www.delawareonline.com/apps/pbcs.dll/article?AID=/20050621/HEALTH/506210311/1113

They got a few things wrong (i.e. we never actually had to use the
oxygen equipment they mentioned - and our house has always been filled
with baby toys - LOL) but otherwise, I am happy that the article talks
about both Moyamoya disease and infantile spasms

Jenny

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Chelsie Experienced Poster Offline Posts: 127 Columbus, USA, usa, 418, 135, OH, Ohio Gender:	Re: Daphne is in the news today Reply #1 - Jun 21^st, 2005 at 10:24am Jenny- What a fantastic article! Thanks so much for sharing her story and educating others! Chelsie
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Mar

Ex Member

Re: Daphne is in the news today
Reply #2 - Jun 21^st, 2005 at 11:12am

Jenny,

Thank you so much for sharing that article with us. I can barely see from the tears. Bless her little heart, she's been through so much. She'll be in my prayers always! I'm so proud, and admire you and your hubby for your strength and perseverance. God love ya's!

DJ, Dr. Steinberg and all that were involved in some way, is an example of what this website is all about. It makes me proud to be a small part of it. I can't stop crying good tears.

Mar

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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 is in the news today Reply #3 - Jun 21^st, 2005 at 12:57pm This is a great article, Jenny! Hooray!!!!! It's great to see our stories slowly getting out there for the world to see. Give little Daphne a big hug for me! Michelle
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shgr Experienced Poster Offline Diagnosed December 2003 Posts: 144 raleigh, USA, usa, 469, 184, NC, North_Carolina Gender:	Re: Daphne is in the news today Reply #4 - Jun 21^st, 2005 at 2:52pm What a fantastic article. I can feel the love that you both have for Daphne and the courage that she must possess. She and both of you are in my thoughts, Stephanie
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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 is in the news today
Reply #5 - Jun 21^st, 2005 at 3:01pm

Hi Jenny,

What a wonderful story about a family who has perservered and Daphne's incredible journey in such a short period of time. Thanks so much for sharing your story and getting the word out about moyamoya and infants. It is wonderful to hear Daphne is doing so well.

Keep up the giggles and stroller rides Daphne!

God Bless,

Lore

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"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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kotipup

Experienced Poster

Offline

My daughter, Daphne, has
Moyamoya

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

Re: Daphne is in the news today
Reply #6 - Jun 21^st, 2005 at 9:55pm

Thank you so much for everyone's response

It was nice to be able to share Daphne's story. I am so proud of her.

In the physical copy of the article, the address to this website was prominently displayed in a resources section, which was nice, too.

I got my first email in response to the article (someone must have gone to Daphne's website and gotten my email) -- it was someone trying to sell me magnets for Daphne!!! LOL Roll Eyes

Unbeleivable!

Jenny

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gotchlorine

Old-Time Poster

Offline

Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: Daphne is in the news today
Reply #7 - Jun 22^nd, 2005 at 1:05am

Wow Jenny . . . I'm almost speechless, which is a fairly unusual circumstance! I saved your post to read last today, as I knew I'd be very emotional. Great article!

You and Ray are the perfect parents for Daphne. There are so many who wouldn't have been able to handle things the way you two have. As Mar said, you possess an amazing strength and ability to persevere. I am proud to call you friends, and so very happy that Daphne is doing well.

Thanks to you guys, another segment of the population will learn about MM, and hopefully more lives saved as a result. That is just wonderful beyond words. Also as Mar said, some very good tears are being shed out in California!

Thanks again for sharing. Please give Daphne a big hug for me, and I'll talk to you soon!

Warmly,
Jill

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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 is in the news today Reply #8 - Jun 22^nd, 2005 at 8:51am Wonderful article, Jenny! Thanks for sharing! -Shari
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tiomasai Experienced Poster Offline Arriba Arriba! Posts: 246 Queens, NY, Gender:	Re: Daphne is in the news today Reply #9 - Jun 23^rd, 2005 at 9:19pm Jenny: This is wonderful! I am proud of you, Ray, and Daphne for putting your story out there and educating yet another segment of the world population. THANK YOU!! Trina
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808annie

New Poster

Offline

"By HIS stripes we are
healed""

Posts: 18
ewa beach, USA, usa, 371, 347, HI, Hawaii
Gender: female

Re: Daphne is in the news today
Reply #10 - Jun 27^th, 2005 at 6:10pm

Amazing how strong your precious angel is....

Yup, there is a special angel keeping watch over her blessed little heart & all the other precious body parts... Wink

The article brought tears to my eyes. Makes one ponder on just how God spreads HIS miracles around & how it impacts others in different ways.

Multitudes of blessing & tons of Gods grace & strength be bestowed upon all of you & may that special angel in charge of your precious one continue to protect her from all harm.

God Love Ya All !!!

Blessings.
~808annie

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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: female

Re: Daphne is in the news today
Reply #11 - Jul 1^st, 2005 at 11:21am

Ray and Jenny,
That was really a wonderful article, its so amazing how strong children are and how much we can learn from them, the patience and strenghth they show us is really something else. She is so precious and talk about a fighter, she was born to you two for a reason you have done an excellent job with her. I hope she keeps improving. The best to you all, we will keep praying for you all.
Nancy

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