How to Help!

I had posted this a few days ago, but decided to redo the post with a bit more information.  Many of you have been asking about ways to help...one way in which I have not mentioned much is the need for blood.  The girls will require between 25-50 blood transfusions during the transplant process.  The doctors are aware of the difficulty it is to match their blood, due to countless previous transfusions they have had.  They have developed many antibodies over time and cannot have the same blood twice.  They have to test several bags before finding the right one.  The quickest they have ever matched their blood is 8 hours...in fact it wasn't even a complete match, it was released upon emergency (Natalie specifically).  It will be a very tricky process.  Natalie and Alice's blood type is O+, however, regardless your blood type, we encourage all who are able to donate.  There are many children in need.  How to donate?  You can contact the United Blood Services through their website or donate through the Red Cross.  Sometimes the easiest way is to sign up for the blood drives that come through the community or through church groups.  I recently attended a conference in Salt Lake given by IDF (Immune Deficiency Foundation), in which I learned more regarding Immune Deficiencies.  A panel of doctors whom we are quite familiar with gave some lectures on the subject.  It was fascinating and educational for me.  I made some great contacts and want to share one thing I learned.  Most everyone is familiar with the newborn screening panel done at birth.  The state of Utah does not include SCIDs on the newborn screening tests.  I heard that it only costs $8.00 for this additional test.  I asked as to why the state does not include it.  I was told that it is a lack of understanding.  Something this simple perhaps can prevent others from having to endure what our children have endured.  I have included the following link if you would like to learn more regarding this subject:

http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign

On Wednesday we will have more information regarding the timeline of events for the girls, as we consult with the physicians of Infectious Disease.

Lisy