Vein of Galen Malformation
20 Sep 2011 1 Comment
Vein of what? Has this chick been hacked? What the what? I know, most of you have probably never heard of this condition but for one of my friends, Dani Stone, Vein of Galen Malformation (VOGM) very nearly took her daughter’s life. An extremely rare brain condition, VOGM left Dani and her family with no idea what to do and little information. Thankfully, after the point of diagnosis she had a parent, via a message board on an overseas VOGM website reach out to her and give her some advice and consequently, some hope.
For Dani and her family, the story has a happy ending. With cutting-edge treatments they were finally able to hear the words, “You’re done with me, Kaitlynn is cured” from Katie’s neurologist and surgeon. They knew they needed to pay it forward. Reaching out to other families in need of answers, advice, resources and hope, Dani started the VOGM Parents Alliance and launched a website for that organization today. She is such an inspiration to me. She often says, “to those to who much has been given, much is expected” which always sounds a little like the line from Spiderman, “with great power comes great responsibility” but I digress. But here Dani is, like the Spiderwoman of VOGM, fighting against a lack of awareness, catching parents in a web of resources and hope. Such a cheesy metaphor. Oh well, she will forgive me.
So if you have a minute, read Dani and her family’s story. Check out her website and help her get her Google search information at the front of the search results for this important, lifesaving resource for parents of VOGM babies!
Sep 20, 2011 @ 23:05:53
Ohhh, friend. *tears* Thank you so much for your friendship, support and love. “Spiderwoman of VOGM?” So. Awesome. Love you!! *squeezy hugs*