From an Older Dandy Walker Varient Gal

Barbara - posted on 08/06/2016 ( no moms have responded yet )




I want to encourage Mom's and people who have a wonderful dandy walker child or have Dandy Walker themselves.
I did not know I had Dandy Walker Variant until I was in my mid 50's and had a stroke. At this time I was told and it made things in life make sense.
I have the cyst, the cerebellum malformation and issues with 4th ventricle (like I cannot and never have been able to run fast, ride a bicycle up a small size hill or mountain, and exert physically the way I kept trying!)
In some ways it was a relief for me to know why and stop being upset with myself. In other ways... it was a bit scary.
I eventually graduated college (30's), had 2 beautiful children, now grown who do not have it, and am now in my mid 60's.
My experiences have been:
As a child I was not as strong as I wanted to be, could not run track, and sometimes got off kilter concentrating. I didn't know anything was wrong so felt a bit behind other's in sports and in stress situations became distracted. I was sensitive to noise, sudden movement. Roller coasters were not my friend and I avoided them except 3 times in my life.
Other than that I was OK but I always did notice something and just thought I was klutzy. I'm glad, in some ways I did not know. In other ways, like feeling "what the heck is wrong" when physically exerting, knowing would have helped.
Please let your child be all they can be naturally and try not to focus on it, I think now looking back. I wish my folks had been a little more patient with me is what I do remember, and I loved them dearly and felt loved.

Later on I wish I knew, like in my early 30's, as I would have not been so irritated with not being able to be more physical with sports at myself. Also with taking a little more time to learn some things. But I did learn and was 8.4 GPA in college, though had to take some classes twice. Also calm quieter helps and always sensitive to noise. Do love to laugh! Always and still!

Now some things seem to be changing in my body, but I want to make sure of what it is before I blame the Dandy. Having a good neurologist helps, but they should be very familiar with Dandy Walker, not just the Syndrome, but the Variant.
I'd like to also find more studies of older people with Dandy Walker, so if you find anything please let me know.

Just wanted you all to know, a child can live to 64 and beyond with it. And I'm know I am lucky, very lucky and grateful. I hope this helps and that all the beautiful children and beyond are filled with love, understanding and kindness always. And please treat children without Dandy Walker as loving as the ones with. Take time for each one as they are each precious, precious pearls in this sea of life.
God Bless the Moms and Thank you.

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