Added: 4 years ago
From: darlarae
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  • Hey darlarae. Its george. I was one of the kids in dandy kids. I have dandy walker syndrome and hydrocephalus. I have had eight brain surgeries in the last year and the last two were on my birthday. In the movie I the the dandy kid who had an identical twin brother who was not born with the brain condition. I almost died in johns hopkins hospital last year on my birthday. My doctor is Ben Carson. Being in that movie was life changing and has helped me as i have gotten older. Thank you.

  • O man, life is so cruel. This suck....

  • Very moving. My daughter Kaylee has Dandy Walker. She is 3 1/2 and doing unbelievably well.  She had a shunt at 6 weeks of age and thankfully it has been working fine. It's programmable so it was adjusted once with no surgery. Everyone agrees she's one of the brightest, funniest kids they've ever met. a little behind athletically, climbing stairs, etc.......but who cares. She's the best little girl. I feel so lucky, we were so scared and will never forget the first time we heard about DW

  • @jwstratford hi my name is vicky and my daughter is expecting a dandy baby she is six months and scared out of her mind the docs are trying to get her to termanate and she dose not want to but they are filling her mind with all sorts i beleve there is some hope its all i have at the moment she only has about two weeks to make her mind up, so so sad , she has a normal wee girl and this baby is the boy she was hopeing for. thank you for listening vicky.

  • My daughter has dandy waker also, she is 14, i know she wont be here, long, but life is not about age's, numbers or time, it is about quality and love and she has that already.

  • This documentary looks wonderful. My daughter has dandy walker malformation. She's almost 5 years old and doing great. I had no idea there was a documentary out there on the disorder she has! Thank you for your amazing work, I hope to see the documentary someday! I'll check out your website as well.

  • The documentary will be screening in Houston at the International Inspirational Film FestivalAUg7-9th

    Were working as hard as possible to get this word out there.Please tell everyone you know and ask them to send out this info so we can continue to raise the much needed awareness.

    Thanks

    Darla

  • Thank you for sharing this video. I am looking forward to see the documentary. Many people do not know about Dandy Walker Syndrome. I was one of them until I learned about it from one of my Nursing preceptor. I hope congress will pass the bill. This will help everyone be more aware of the condition because each child who have DWS is different.

  • The documentary will be screening at the Houston International Inspirational film festival Aug7-9thPlease tell everyone you know about this documentary and festival.

    We are trying as hard a spossible to get it out there to raise awareness.

    Thanks

    Darla

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