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Dandy-Walker Syndrome stories
I joined this group in the hope to raise awareness. My son was born with Oesophageal atresia ( now repaired ). A week later we found out he also had dandy walker variant, lissencephaly and spina bifida occulta. Doctors couldn't give us much informati...
Views: 710 Dec 29, 2015, 5:02 PM by Alex
I was pre-diagnosed when my mommy was 20 weeks pregnant, and MRI after birth confirmed my syndrome. I'm in lots of therapy and getting stronger everyday.
Views: 678 Jan 1, 2016, 4:43 AM by Nathan
Julian was born in 2010 and few weeks after his birth we found out he has Dandy Walker malformation - allegedly because of congenital infection with cytomegalovirus (CMV).
He has severe disabilities and is totally dependent on us - he can't ...
Views: 616 Jul 29, 2016, 12:00 PM by Urška
My son Sebastian was born in December 1994, in late summer 1995 he started having seizures. After a few EEG's and a brain mri they said he has Dandy Walker Malformation. He was a bit behind meeting his milestones and the doctors had told me not to wo...
Views: 471 Aug 14, 2017, 3:11 PM by Susan
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