Hello Michelle,

    We had Taylor's blood tested for the deletion also.  Dr. Biegel ran the tests, and Tay had the pre-disposition syndrome.  Like you, neither me nor my husband have the deletion.  From what I understand, it is actually very rare for one of the parents to show up with the deletion.  I do know of one family on this site where the father also showed up as having the pre-disposition syndrome, but that is about all.  As to how this effects treatment, outcome, and other options, I just do not know.  My daughter passed away a little over two years ago, after ten months of treatment.  She was diagnosed at birth.  But, afterwards, when we got the genetic testing back, I was not given the impression that the pre-disposition syndrome was considered the reason that the treatments did not work for her.  They just didn't work.  So, I guess all I can really say is that yes we had the testing done, and very sorry I don't have more information for you.  If you think of any questions for me, feel free to write me on here, or to e-mail me:    bianca_lefleur@hotmail.com

    We will be thinking of you and your family.  Brandy