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Danielle

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3 year old daughter with
Moyamoya disease

Posts: 71
Michigan
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children's book on moyamoya
Jun 10^th, 2009 at 3:45pm

Hello everyone, Has anyone ever heard or read this children's book on moyamoya? It's called SVEN. I googled moyamoya images and found it on moyamoya. eu. It is described as a picture book in English and German for ages 4 and up. It aims to explain the illness to affected children in an easily understood manner. The site is in German and I'm not sure of the price or how to order it. Please Help! Danielle

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KTiller

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Freeland, USA, usa, 51, 28, WA, Washington
Gender: female

Re: children's book on moyamoya
Reply #1 - Jun 10^th, 2009 at 6:21pm

Hi Danielle,
The web address is Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

, the email address is Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

. You might mention in the remarks box that you are requesting the English edition. This is the link to the order page. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Here' the information about SVEN from the website:

Andrea Caprez / PD Dr. med. Nadia Khan

SVEN
Ein Kinderbuch ab 4 Jahren
ISBN-13: 978-3-03731-009-0, ISBN-10: 3-03731-009-X
48 Seiten, farbig, Hardcover, 25x25 cm, Euro 20.- / sFr. 30.-
Auch auf Englisch erhältlich: ISBN-13: 978-3-03731-011-3, ISBN-10: 3-03731-011-1

Nadia's other book, Fatama's Fantastic Voyage, is for children of about ten. I don't see it listed on the website. I just sent her an email asking her what the cost is and how to ensure that you receive an English language edition.

The ISBNs for Fatama's Fantastic Voyage are:
ISBN-13: 978-3-03731-012-0, ISBN-10: 3-03731-012-X
I have copies of both books. They're really lovely books.
Kim

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« Last Edit: Jun 10^th, 2009 at 8:29pm by KTiller »

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Reagan Junior Poster Offline Posts: 75 Lee's summit, USA, usa, 302, 159, MO, Missouri Gender:	Re: children's book on moyamoya Reply #2 - Jun 10^th, 2009 at 10:58pm I'm wondering...What do you guys think about these books for children who have parents that have Moyamoya? My children are 2 and 4. I also have a stepson who was present for the surgery who is 11. Do you think this might better help them not be so fearful? Reagan
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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: children's book on moyamoya Reply #3 - Jun 11^th, 2009 at 4:10am Thanks for the info, Kim, I'd also like to get my hands on both the books. Reagan, I think it's a great idea. Children respond better to news and information when it is conveyed to them via some platform they can relate to. Mark (Luca's Dad)
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Danielle

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3 year old daughter with
Moyamoya disease

Posts: 71
Michigan
Gender: female

Re: children's book on moyamoya
Reply #4 - Jun 11^th, 2009 at 12:09pm

Kim, Thank you so much for the help. I am going to order them both today. I can't wait to see them. I also thought I would have family members read them to help explain. Sometimes I feel like I could explain it ten times to the same person and they still don't get it. I love moyamoya.com. You have all helped me out tremendously!!! Cheesy

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freckles

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Moyamoya Survivor!!

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Lakeland, FL
Gender: female

Re: children's book on moyamoya
Reply #5 - Jun 17^th, 2009 at 5:04am

Dr. Kahnn gave me copies of both of her books and I can tell you that they are both excellent.

Sven is my favorite of the two and uses a great analogy to explain how Moyamoya works that i think is great for both children and adults. Here are the ISBN for the English vesions:

Sven ISBN: 978-3-03731-012-0
Fatma's Fantastic Journey ISBN: 978-3-03731-011-3

Hope this helps! They really are a fantastic way to explain moyamoya in a "non-scary" way

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Entesar S. MM.com Benefactor Offline My nieces Joad has MM Posts: 53 UK Gender:	Re: children's book on moyamoya Reply #6 - Jun 17^th, 2009 at 5:38am Hi all I live in the UK and I was wondering how to get a hold of these books. I tried amazon but couldn't find it there. Please let me know Thanks, Entesar
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freckles Junior Poster Offline Moyamoya Survivor!! Posts: 86 Lakeland, FL Gender:	Re: children's book on moyamoya Reply #7 - Jun 17^th, 2009 at 7:23pm Hey Everybody! I talked with Dr. Khan today and she says that for right now the only way to get ahold of the books in English is through her. If you would like copies of either of these books please send her an e-mail and she'll be in touch. nadiaakhann@gmail.com
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Danielle Junior Poster Offline 3 year old daughter with Moyamoya disease Posts: 71 Michigan Gender:	Re: children's book on moyamoya Reply #8 - Jun 18^th, 2009 at 10:52am Thank you so much for the info. I had trouble ordering them myself. I sent Dr. Khan an email this morning. Did she just give them to you? I want to see these books so bad I'll pay just about anything for them. My 2 year old loves books. Does Sven have paper pages or board?
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Danielle Junior Poster Offline 3 year old daughter with Moyamoya disease Posts: 71 Michigan Gender:	Re: children's book on moyamoya Reply #9 - Jun 18^th, 2009 at 12:53pm I just heard back from Dr. Khan she said she will send them in the mail today. No charge. WOW!!!! That took only 1 hour to hear back from her. Does she work at Stanford? Very impressive. Thanks again. Danielle
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freckles Junior Poster Offline Moyamoya Survivor!! Posts: 86 Lakeland, FL Gender:	Re: children's book on moyamoya Reply #10 - Jun 18^th, 2009 at 2:36pm Dr. Kahn does work at Stanford right now, she's one of Dr. Steinberg's fellows. She is actually from Switzerland which is why it's so hard to get her books in English though they have been translated into a few different languages if I remember correctly.
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Entesar S. MM.com Benefactor Offline My nieces Joad has MM Posts: 53 UK Gender:	Re: children's book on moyamoya Reply #11 - Jun 18^th, 2009 at 4:32pm I got in touch with Dr. Khan today she is so nice and she said she will send me the books to my address in UK free of charge she won't even take money for the books. She is very kind.
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DFior New Poster Offline I Love MM.com! Posts: 22 Long Island NY Gender:	Re: children's book on moyamoya Reply #12 - Jan 12^th, 2011 at 3:10pm I hope that I can still get these books. I sent Dr. Khan an email today. I am very anxious to have these for my granddaughter to read. Diane
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DFior New Poster Offline I Love MM.com! Posts: 22 Long Island NY Gender:	Re: children's book on moyamoya Reply #13 - Jan 13^th, 2011 at 6:05pm I just emailed Dr. Khan and she still was willing to mail me the books today for free. WOW I couldn't believe. Now I'm can't wait to get them
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DFior New Poster Offline I Love MM.com! Posts: 22 Long Island NY Gender:	Re: children's book on moyamoya Reply #14 - Jan 13^th, 2011 at 6:09pm I forgot to mention that she gave me her new email nkwfns@gmail.com She says any one who wants the books can contact her. Diane
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Little Luca

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Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female

Re: children's book on moyamoya
Reply #15 - Feb 22^nd, 2011 at 5:01am

Hi All

I recieved my books yesterday. To say I'm thrilled is an understatement. Nadia Khan is a very special woman on a mission to help moyamoya children.

It took 2 years from when I first heard of the books until now, when I finally got them. This is not through any lack of effort from Nadia; she really bent over backwards to get them to me. It's mostly down to the very poor postal service in South Africa.

Not only has she produced these wonderful hard cover children's books, but she isn't charging for them either in an effort to help our children come to terms with what they're dealing with and to lessen their anxiety. Amazing!

She has set up a children's moyamoya clinic in Zurich to help those in Europe affected (and anywhere else, I guess).

She truly deserves the highest praise and I for one am a huge fan of hers.

Take care everyone, and stay strong
Mark (Luca's Dad)

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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!

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yunnanababy

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My daughter had her surgeries
in October 2009

Posts: 137
Indianapolis, IN USA
Gender: female

Re: children's book on moyamoya
Reply #16 - Feb 25^th, 2011 at 4:03pm

I agree wholeheartedly Mark! Ruby received her books a few weeks ago, and she hardly ever lets them out of her site. She's read them dozens of times already & she even sleeps with them under her pillow. I would be more than willing to make a donation to her clinic since she wouldn't accept payment for the books. Anyone know how to go about doing so?

Jennifer
Ruby's mom

Jennifer

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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli

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