Busy Day

This morning, I checked the NMF site - I dont check it regularly but probably once a week or so. 

Well, what a busy day it is there today!

TAD Coalition just launched a campaign to maximize the impact of the new diagnosis and treatment guidelines and reduce the number of deaths from aortic dissection and rupture.   B had a dissection years ago - it is so scary when it is happening and the more we can teach doctors and the public, the more people will survive the event.  My heart breaks every time I think of John Ritter and how his passing was so preventable - but he leaves behind a legacy that now includes the Ritter Rules.

I also noticed this morning that NMF has posted the 2010 convention information online.  I want to go.  Dont necessarily have the money to take the family but I really want to go.  Why?  Because we have managed up to now managing B's Marfan Syndrome.  Somehow we have gotten through all the surgeries in the past five years and G's diagnosis.  But now, as G is growing up, I find myself wanting to be part of the Marfan community.  I want another mom to call and meet for coffee who understands the struggles that Marfan Syndrome brings to a kindergarten kid.  I want to be able to talk about Marfan Syndrome and what it means to me, the only unaffected person in the house.  And I want to have someone who can help guide me through this - parenting and advocating for a child with Marfan Syndrome. 

I applied for the registration scholarship today.  Because I believe that bringing my family to Houston this summer could be the start of a new journey - one where we arent alone in the Marfan path; that we are surrounded by other people who know what it feels like. 

Cross your fingers for us - we find out in May if we got the scholarship.