August 2, 2012
by marfmom
0 comments
While I’m away at the National Marfan Foundation conference and vacation with my family, I will have a few guest posters from the Marfan community. Today you meet Katie, one of the fabulous teens I’ve worked with. She is mature … Continue reading
July 30, 2012
by marfmom
6 Comments
Last Monday Baby J had his first surgical procedure: an endoscopy to check for celiac disease and other potential causes of his GI problems. I had mixed emotions going into it. On one hand I was sad that he needed … Continue reading
June 21, 2012
by marfmom
15 Comments
The perhaps peculiar – but beautiful – part of being a part of the Marfan syndrome community is the intense bond that is developed among affected families. I’ve never seen else anything like it. Every time a newly diagnosed, scared … Continue reading