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A copy of the current financial statement of the Dandy-Walker Alliance, Inc. is available by writing to: Dandy-Walker Alliance, Inc. 10325 Kensington Pkwy Suite 384 Kensington, MD 20895 or by calling 1-877-Dandy-Walker. Documents and information submitted under the Maryland Solicitations Act are also available, for the cost of postage and copies, from the Maryland Secretary of State, State House, Annapolis MD 21401, 410-974-5534.
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A Dandy-Walker Parent

Hi,

I was surprised to find this forum after ALL these years.  My son is now 37 years old.  He was born with Dandy-Walker Syndrome, but I didn’t know about it until he was much older.  My neuro-surgeon didn’t feel I needed to know until HE thought I could handle it.  I really don’t know why doctors think they have a better idea of what you can handle and what you can’t.  My belief is that without the knowledge of what you’re dealing with, how can you learn to deal with it?

My son is living in a group home and is doing very well.  He is learning disabled and has many physical disabilities as well, scoliosis, hydrocephalus, blind in one eye, CP.  Plus he has an inherited blood disorder and is on coumadin for life.  God has blessed me with a wonderful young man.  We’ve been through alot through these many years, but as long as he stays healthy, and continues to do what he needs to to stay that way, all is good!  Occasionally he requires a shunt revision, but there was 13 years between the last two.  Hopefully we’ll get as many or more from this last revision was was done in 2005. (5 yrs & counting!)

I would love any “chat” with anyone else who is either just beginning this journey, or any who have been on the path along with me for years.

Hopefully this post will bring some kind of “hope” to some who are just beginning…

July 18th, 2010 | Category: General

1 comment to A Dandy-Walker Parent

  • lwilley
    July 25th, 2010 at 5:59 pm

    Hello,
    I’m new to this also. My niece is expecting a baby girl the middle of Sept. She has been diagnosed with DWS. We are all very anxious and are waiting to see what the extent of her disabilities will be after she is born. The Dr says the hydro is mild and if it stays mild nothing emergent will have to be done. The baby also has a possible coarctation of the Aorta, we will follow up with the Cardiologist in August. We have read so many stories online, some negative, but to our surprise there is many more stories that give us hope. All the parents feel blessed and consider themselves fortunate to have their sweet children. I’m glad your son is doing well. We will support my niece & be there to assist her anyway we can. It’s comforting to have this website & the Dandy Walker Facebook site to support us, everyone is very compassionate. Thank for posting your story and giving us HOPE. Linda

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