May in Montana is New Awareness Month for Rare Disease

Dandy-Walker Syndrome is a rare illness with little known about it, which has inspired a Helena mom to spread awareness in Montana...

Anna's daughter Faith was born with Dandy-Walker Syndrome. Only 1 in 2,500   babies are born with it. The disease causes a malformation of the brain. One symptom is hydrocephalus, fluid in the brain. And when Faith was born Anna felt she had no support system of other families with kids facing the same illness. That's one reason why Anna decided to get the month of may officiated as Dandy-Walker Syndrome and hydrocephalus awareness month in Montana.  The other reason is to gain more knowledge.

Anna said there aren't many case studies.  When Faith was born she was handed about five case studies, which is why she's trying to do the fundraiser.

Anna is in the initial planning phases of a fun-run and block party fundraiser in Helena to raise awareness for dandy-walker syndrome. All proceeds will be donated to the Dandy-Walker Alliance which provides support for families and funds research into the little known disease. 

With May officially Dandy-Walker Syndrome and hydrocephalus awareness month in Montana, Anna hopes Faith sees how she's making a difference in her home state. 

Recommended for you