Love for Ava and Liv

In late July Ava, age 3 ½, and Olivia (Liv), age 2, were both diagnosed with an extremely rare genetic condition called Leukocyte Adhesion Deficiency Type 1 (LAD1).  Basically it means their white blood cells do not function properly and do not reach the site of infection like they should.  The cure is a bone marrow transplant so both girls have been placed on the list in search of a donor.  In the mean time they are both on preventative prophylactic medications.

 

Once a donor is found,  they each will need chemotherapy to wipe out the existing immune system, followed by an extensive inpatient stay (up to 8 weeks)  for the transplant which will be done in Cincinnati.  After discharge they will need to live within 30 miles of Cincinnati for up to 6 months for follow up blood work and therapy several times a week.

 

It will take up to 2 years for the new immune systems to develop so they will not be able to start school for several years.  The timeline on all this depends on who the donor will be and I imagine each child will be done at different times but this is yet to be determined.

 

The emotional magnitude of this condition and the financial burden is all very overwhelming for the family and not only affecting one but both of these precious little girls.  Every prayer, every kind word, and every penny are appreciated.  Please find it in your heart to help Jon and Alicia as they navigate this extremely difficult path they have been given.