VERY interesting!! MEG...an opinion??

[Guest guest]

Yesterday I went to our best friends, twins 1st birthday party where I began chatting with a nurse and we talked all about and Jillian. She had heard of CHARGE Syndrome before only because when she wourked at Fairfax Hospital where they were both born, she used to be the one putting all the codes for the different syndromes and defects in the computer... then she began to tell me about her husband (who I am now just dying to meet). She met him when he was over 40 so I didn't ask but am assuming is in the 50's now. She said she always knew he was different but has never been diagnosed with anything. Here's a list of his symptoms which ALL happen to be on the same side of his body.

One eye smaller/ptossis

one floppy ear

one club foot

scolliossis

both narrowed nasal passages

slopping shoulders/low muscle tone

constant blood in urine that they don't know what is. The docs can't figure it out...so I told her I'd ask the CHARGE list what it could be..

Doesn't this sound so CHARGE???

Oh yeah and she said her husband would just die if he knew we were talking about this, but she said his penis was quite small but in no way micro.....

I sent her home looking for palmar creases and a triangular concha in the other ear (HAHAHA)

He's of normal intelligence(brilliant actually) but she said because he was such a reject as a child and a recluse that he spent all his time in books and studying...They were going to a party with President Bush last night!!!!

I'll let you guys know if I ever get to meet him and what we find out.

Meg, what do you think??

Foley

MOm to Jackosn 5, (CHARGE in heaven) and JILLIAN 3 cHaRGE