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Re: femoral hypoplasia unusual facies syndromeFrom: anonymous@obgyn.netWed, 16 Jul 2003 04:55:50 -0500 (CDT)
At Sun, 23 Feb 2003, jen wrote: > >im writninG in reguard to a message that was written in 2000 about >femoral hypoplasia facies i was shocked to see that WE HAVE BEEN LOOKING >FOR PPL WITH THIS SYNDROME FOR 8 YEARS WAS BEGINNING TO THINK MY DAUGHTR >WAS THE OLNY ONE I KNOW THIS IS PROBABLY NOT THE PLACE TO BE WRITING BUT >WHEN I SAW THIS I WAS SOOO EXCITED SO TO ALL YOU PPL THAT ARE HERE TO >READ ABOUT BIRTH AND PREG IM SORRY ! BUT IF ANY OF YOU KNOW ANY ONE WITH >THIS SYNDROME PLZZZZZZZZZ FEEL FREE TO CONTACT ME AT SEABREEZE4@MSN .COM > THANKS IS NEVER ENOUGH Hello My name is Tracy and i've just read your e-mail about femoral hypoplasia - unusual facies syndrome. I too have a daughter who was diagnosed with this syndrome. I thought we were the only ones to have a daughter in this country to have this so although this sounds awful i'm glad we aren't alone. If you would like to e-mail myself i would be delighted to have a chat with you I;'ll tell you a little about Kirsty. She was born in 1988, and from her delivery you could see straight away something was not right Her femur bones were about a third of the size they should be, she has dislocated hips, cleft palate and her elbow bone in her left arm has not developed. The prognosis was she would never walk, I was devastated especially as this was my first child. But she has overcome a great deal of hurdles and she walks,rides a bike, rollerskates, in fact you name it and kirsty will have a go!......... She is now 15 and copes really well..........please get in touch it would be lovely to hear from you regards Tracy
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