May 24, 2011
by marfmom
2 Comments
Ben and I first met as teenagers at the 1997 National Marfan Foundation conference. The program was small then: just 15 of us. These days he & I co-lead the teen program, which regularly sees 80-100 teens each year. “Look … Continue reading
May 24, 2011
by marfmom
0 comments
Today {May 22} is my thirty-first birthday. I am the eldest of four – and the spontaneous mutation of the lot. I like to say ” I was the only one who was planned- and this is what they got!” … Continue reading
May 23, 2011
by marfmom
4 Comments
“The lens in your daughter’s eye is dislocated.” And with these words, our journey to a Marfan syndrome diagnosis began. Our beautiful daughter Alexa was born in April of 2003. She was perfect. She was our first baby and we … Continue reading