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Thread: Facebook Awareness BIG WIN for Cranio/Plagio!!

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    Leighasmom Leighasmom's Avatar
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    Default Facebook Awareness BIG WIN for Cranio/Plagio!!

    Facebook users do any of you know about the group "I Love My Kids"? They have 180,668 fans as of today. Well they posted our video about an hour ago. Than means that Craniosynostosis/ Positional Plagiocephaly CAPPS, CranioKids, ect awareness just hit the page of 180 thousand active fans! WOW! Is this a big win for awareness or not? At least parents are talking about this now! They want me to write a blog post on our story and they'll post it too!!! So I'm off to write about you guys/CAPPS and what Cranio awareness and understanding means to all of us. This also means that I might get some support from them for our Beauty in Imperfection project(I say OUR because if this is something I can get into print it is all of your's project and a big win for awareness.) Anyways had to share here is the link to I Love My Kids if u are a Facebook user http://www.facebook.com/#!/iheartmykids
    Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001
    Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon
    Colton 3/24/09 normocephaly
    OUR Story

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    sharon/ proud mom of 5 momof2withcranio momof2withcranio's Avatar
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    I havent heard of it but that is amazing.. Congrats.. that is so exciting..
    Mother to 5 beautiful children. My youngest 2 were born with Saggital. Jacob-surgery 6/9/03 Sean-surgery 4/7/05.
    Sean has partial epileptic seizures and some dental issues and sleep apnea (seans 6 yr craniversary)

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    audra15 is on a distinguished road audra15's Avatar
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    Great job, Mel! You're really spreading the word :)
    Beth
    Kyra Rose - born 5/25/09
    sagittal surgery -10/14/09 at CHOP

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    Alex's mama *jules* is on a distinguished road *jules*'s Avatar
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    way to go Mel!!!! :)
    Julie
    mom of two boys
    Zachary Joseph Marquez 9/4/02 - no cranio
    Alexander Michael Marquez 9/2/08 - metopic cranio
    surgery 5/15/09 with Dr. Fearon & Dr. Sacco

    http://www.caringbridge.org/visit/alexmarquez

  5. #5
    Zachary & Justin's Mommy Rhonda O is just starting out Rhonda O's Avatar
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    That is great news Mel!!


    Mommy to Zachary 6 yrs old (sagittal, surgery Aug. 24, 2004)
    Justin 3 years old (no Cranio)

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    123aincol3 123aincol3's Avatar
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    Thats brillant, Mel!
    Aine partner to Colin
    Mum to
    Conal 8
    Kelan 3
    Sheenagh 1 (Sagittal Synostosis)
    Had surgery 02 Mar 2009 in The Royal Belfast Hospital for Sick Children

    We are on the other side

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    Leighasmom Leighasmom's Avatar
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    So far have heard from five mom's Sent them all links one is a mom who has a 4 and half yr old and she's been fighting this with doctors. He's delayed severely and she only just now got a nuero consult when she was getting him ready for school and seeking out developmental specialst. Hope she post I'm still on cloud nine about this getting posted! I have to take time and write a blog for them also but thinking about how to say what needs to be said you know.
    Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001
    Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon
    Colton 3/24/09 normocephaly
    OUR Story

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