Musings of a Marfan Mom



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  1. Too funny! I’ve always been in awe of that ability. 😉

    WW: Incredible Shrinking Girl


  2. How funny!

    I have been reading your blog for quite a while and enjoying the things you have to say. Now, I’m glad I’ve been keeping up on it.

    We just found out my baby girl has Marfan. When she was born, I marveled at how LONG her fingers were and how tall she got so fast and how BIG her feet were. She was also very flexible and has hitchhiker’s thumbs and we can touch her toes behind her head. The reason we started looking into it is because my 17-year-old brother went in to see an orthopedist because he kept dislocating his shoulders, and the orthopedist sent HIM to another doctor on suspicions that my brother has Marfan because of a lot of the physical characteristics he has. He has Marfan as well.

    We didn’t know we had such a heavy family history of it. My mom has two brothers and a sister (from another father) who have it because there is genetic tendency from both sides of the family.

    Thank you for sharing your stories. I NEVER thought I’d have a child of my own–let alone a BROTHER–with Marfan.


  3. Awesome. As someone who also has freaky-deaky double-jointed hands I love seeing this!


  4. I am new to all of this & posting comments, etc. I have been almost obsessively researching Marfan syndrome for the past couple of weeks. I read your old then new entries. then saw that you mentioned baby J being diagnosed. Reading your entries has helped me already…& i am hoping that you will (if already discussed & i am just missing it, please clue me in) share insight on J’s development. The sites I have found related to infants with Marfan syndrome are shared lives of those whose infants have presented symptoms on the severe side of the spectrm. I can go into my son’s issues, if interested, but those pics could have been of his hands. He has not been officially diagnosed & is 6 mo old. I guess I have been searching for support & understanding for this age of development. Lately, it has been confsing & scary! Thank you for sharing your lives with us.


    marfmom Reply:

    I’ll send you an email directly :)


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