Microvillus Inclusion Disease in Children - HELP!!

OK girls - you might have read in the past that my neice's daughter has been in the hospital since birth.  We'll they did a biopsy and this was her diagnosis.  I've read up on this and apparently it's pretty dang rare.  Has anybody else even heard of this or have ANY suggestions on how to help my neice's baby?  They are already talking intestine transplant and possibly liver transplant if they can't get to the intestines before her little liver starts failing.  I'm at a loss.

[peekawho]

Nope, don't know a thing about it.  I hope they can help her.

[AnnieBrooke]

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1523325

Is she transferred to pediatric GI specialists for her care?

[KellyTexas]

She is at Children's Medical Center in MN right now.  They will be going to visit the one of 3 GI specialist who has handled a case of this before.  Doesn't sound promising to me.  I just thought I'd ask if anybody had gone through this or knew of somebody who had.  

[tmv]

A friend's neighbor' daughter (sorry) has a problem that sounds very similar to this one. She is on a waiting list for a intestinal transplant. I have not met her but my friend says that she is very tiny and has a tube feeding in place with a little backpack for the liquid. I will try to find out if this is related and let you know. Sorry if I couldn't be of more help to you.