Added: 2 years ago
From: DandyWalkerAlliance
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  • My daughter was diagnosed with dandy walker when I was 20 weeks pregnant with her. they said she won't walk, talk and will be retarded. Wrong! She is 6 years old now she started walking at 18 months, her speech is delayed and she really cannot hold a pencil that well, but she is doing great in her classes at school. She is meeting her milestones at her own time.

  • My son Emilio has dandy walker and the doctors told me that he's going be retarded ,can't talk, can't walk and might not make it to see age 6 . I was giving my life to god when I was pregnant with Emilio a week before his due date I was at church and pastor rosa told me to come to the front so I did. She and the whole church was praying for Emilio and she told me that god spoke to her and he had a message for me . I quote god said that not to worried about Emilio he's going be fine and normal

  • My older brother has this. Doctors said he wouldnt be able to walk, talk, see, or anything. Although he can't walk, he can read he can write, and can talk. He's amazing and I love him so much.

  • My son is five and a half and has Dandy-Walker Variant. He walked today for the first time without any assistance. He inspires me.

  • @lilbitolavender congrats mama! That had to be such an amazing moment!

  • my son has Dandy Walker syndrome ,with Hydrocephalus. He had shunt, and he has had 15 surgeries in 8 years. Now is good condition without shunt because he had an operation (fenestration of cyst) here in Greece.

    His doctor is neurosurgeon Dr Zountsas and save the life of my son, maybe he can save and your life . Email: zountsas@hol.gr, ++30 2310 306.500

  • my eldest is 14 years old had dandy walker and Hydrocephalus and epilepsy.also she might have cancer or luekemia. seeing a surgeon specialist on tuesday . as she has a golf ball lump in her arm and lumps under her armpits and neck and abdomen and groin,. xo

  • Yesterday the doctors told me that my baby probably going to have this syndrome, i was so sad. Today i saw this video and i feel better i´m going to do as possible as i can for my baby. I would like to know if there is an association here in Mexico for treating this syndrome. Thanks for sharing this :)

  • Thank you for sharing this. I'm in med school and we're learning about this syndrome. It's nice to understand it from beyond a medical perspective. What a beautiful video!

  • I was born with DandyWalkers syndrome in March 1978 in Sweden. When I was a baby they thought first that I would never learn how to walk, but when I was two years old I started walking. I have had only three surgerys so far. I always let people know about DandyWalkers syndrome. I also have ADHD, but I did not know that until I was 15 that I also had ADHD.

  • thousand missed the like button what is wrong with those people

  • can anyone tell me the title of this song?

  • Adorable.

  • I have Dandy-Walker syndrome, also. I'm sixteen. I had two brain surgeries before I turned two and still have the same shunt. I haven't had it checked since then... I guess I should though, huh. I'm not a stranger to headaches. I'm in accelerated classes and have always been. So, for those of you who have babies being diagnosed with this, don't lose your hopes. All I have is a little bit of a larger head and not that great of balance, but hey, I can walk. :-)

  • @Spangley03 yes be thankful for that:) sometimes i dont get the headaches th. im used to them alo. i actually like them now.

  • @fmaotaku2010 I am thankful. I'm happy to not have it worse. I don't like my headaches. Migraines make me feel sick. I get regular headaches, but sometimes they keep me from doing physical activity.

  • @fmaotaku2010 :) yeah when i first got diagnosed i was like "well how come me,i mean ino some kids have it worse." im happy just to be alive!

  • i am of this July 23 yrs old and i was diagnosed with Dandy-Walker Syndrome as a baby and i have only had it operated on once. and that at age 18. the cord was replaced the original shunt that is in my head is still there and has not been touched. to the parents out there who are told their child has it i encourage you to push them past all the challenges and if you can mainstream them and push for college it can be done.

  • My daughter was diagnosed with Dandy walker and hyrdosphilis at the age of 6mths where she had a VP shunt placed into her head..scareiest thing I have ever had to face in my life..As a new mom only hope for the best and I have a very intellagent 2 1/2 year old!

  • I have DWS Arnold Chiari Epilepsy and Spina Bfida Occulta.

  • My son is 4 and has autism and when he was 3 he got diagonse with Dandy walker cyst.

  • My wife was born with Dandy Walker and now leads a better life after a recent surgery to correct a malfunctioning vp shunt. If you have a shunt put in make sure you get it checked regularly because it can clog. My wife went 23 years without it being checked and she had to have emergency surgery because her shunt was not draining anymore. If you are getting headaches or migraines get your shunt checked.

  • Hey, can you send me the title to that song? Or somewhere that I can get the sheet music to this song? I really wanna learn to play this!!!!

  • I should be on that video. I'm not exactly a child, though. I'm fifteen. XD But I have Dandy-Walker syndrome. And thankfully, all I have are some physical instabilities. You can even see in my videos that, physically, I look just fine.

  • @dextersdatabase im 19 and i have that. ive had it since i wads born(3 and a half mons. early i bl and 8 1/2 onzs.) it didnt give me any problems until i started having headaches two yrs. ago,every morning when i woke up. if you would like to talk message me.

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