Baby J had his first sleep study on Sunday night. I was dreading it, because I was sure it would be difficult to get him to go to sleep with all of those wires on. In the end, it was … Continue reading
June 28, 2011
by marfmom
3 Comments
Tag Archives: child with marfan
May 25, 2011
by marfmom
0 comments
Kaitlyn’s Story
Kaitlyn is one of the fabulous teens I have the privilege of working with. She currently serves on the Teen Council, a subcommittee of the National Marfan Foundation’s Board of Directors. My name is Kaitlyn, I am 16 years old, … Continue reading
May 23, 2011
by marfmom
4 Comments
Tara-Lee & Alexa’s Story
“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