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hello, and first thank you for having this group. I have been on yahoogroups for years and never thought of finding a group for support here. I've had no luck finding local groups or people at all... anyways.. I'm horrible at introductions but I will try my best.... uhh.. okay here we go.
my names Nysie, and I am near Tampa, FL.. I have a 10 yr old daughter, Kat, who was diagnosed with Marfan's syndrome by Baylor Genetics in Texas were we used to live. It runs rather rampant in her father's family, and though him and I are now divorced, I know the history and such for her sake, and because I dealt with it often with my ex.
Since I've always known she had it, and was familiar with it, I was somewhat prepared (or so I thought) for what was upcoming. she's 10 now, 5'11 and 140lbs..Baylor estimated her "Full height" to be around 7ft. her father is 6'11. so it wouldn't surprise me much. Kat has had a mitral valve prolapse diagnosis for about a year now, and in April we go to start on a new string of beta blockers and such to help with that. She also has scoliosis, and as of today's dentist visit, is going to need braces due to severe dental crowding.
I thought I'd be prepared for all this, but when it comes down to it, its all pretty daunting in the end. She is a bright, funny and loving child, who just laughs when people think she's 16 years old, or ask her if she's going to be a basketball star (she hasn't been in a phsyical ed class since first grade when she almost collapsed on the track field from her heart which is when we found out it had finally 'gone bad') She's very aware of what's wrong with her, and she's accepted it (possibly better then I have I think somedays)
Anyways, Im babbling, if theres anything else anyone wants to know I will happily answer.
Thank you for having me,
Nys
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