January 10, 2016
by marfmom
4 Comments
One of the most difficult parts about having Marfan syndrome or a related disorder is figuring out how to manage activity restrictions. Affected youth (and some adults!) see themselves as invincible. Parents may be inclined to place their children in … Continue reading
July 4, 2011
by marfmom
4 Comments
I want my children to experience everything good in the world. I want them to share the aspects of childhood that their father and I look back on fondly. While I know their respective diagnoses will limit their ability to … Continue reading
January 27, 2010
by marfmom
18 Comments
The time has come. Menininho has finally hit 20 lbs. Because of my heart and back problems, my doctors told me before I became pregnant that once my future baby hit 20 lbs I’d no longer be allowed to carry … Continue reading