Step in the Right Direction

Things are starting to look up for Brady and I.  As my last blog post said, we are finally starting to get some answers from our testing.  

It appears that Brady and I are both carriers of a very rare disease called Meckel-Gruber Syndrome.  What?  Never heard of it?  We had never heard of it either before Hope and Ben were born.  We keep passing the gene that carries this disease on to our children.  There are things we might be able to do one day to have a healthy child, but we have some things in mind already.  

On to the part where things are starting to look up.  We really, really want to do some testing so we can eventually know what is going on.  However, this testing for Meckel-Gruber can cost upwards of $6000 if you have to test all genes associated with the syndrome.  I have already said how awesome our geneticist, Karrie, is and I have to say she's even better now.  She found us a research study at the Mayo Clinic that we can get in on.  This means that they would test all of the associated genes for FREE.  If something is found, we may have to pay a small laboratory fee, but that would be it.  

I don't think I can really articulate how much of a relief and how great of news this was!  Any day you can save $6000 is a great day!  

We've been getting such great news this week!  I can't wait to see what the weekend holds!