From: Amy Walsh

Date: 1/15/2007 9:00:28 AM

To: evanssyndrome@yahoogroups.com

Subject: [EvansSyndrome] Aidan update

Hi all,

 

I have not been very good lately in corresponding, but still read all the posts.  It seems group has quieted down some.  This group was a blessing to me when Aidan was first diagnosed and I thank Lou for starting it.  I am not sure if any of the members familiar with us still read, but I wanted to update a little on Aidan for those who remember him.

 

Although Evans Syndrome was Aidan's first diagnosis, over the past five years he has aquired a new problem each year.  He has had Guillain Barre Syndrome, and has ongoing problems with psoriasis and vitiligo.  He had chronic pnuemonias which led to permanent damage to lung tissue.  He currently suffers from stomach distention related (we think) to pseudo-obstruction.  2005 it was finally concluded that all these problems must have an underlying cause and it was found that AIdan has a primary immune deficiency.  Last year a dagnosis was confirmed and there was a mutation found in his RAG1/RAG2 genes that can cause combined immune deficiency (Aidan has decreased T and B cell function).  Although he has received IVIG monthly over the past year and a half his problems persist, so we now face the decision of stem cell transplant. 

 

I gave birth to our third baby boy in October.  We were blessed to find he is an identical HLA match to Aidan and does not carry the RAG mutation.  His cord blood will be used to give Aidan a new chance at life.  Although we are from Chicago area, Aidan will be transplanted in Cincinnati.  We found they have one of the best immunologists doing transplants in the US.  So we leave today to begin Aidan's pre-transplant work-up and to set a date for the transplant to take place.  I have faith that this will be the best long term choice for Aidan and God will keep watch.  Please keep him in your prayers.  Thanks to all.

 

Amy

mom to Aidan (6 years)