Labor Day

September 4, 2017

FARF 5K Sponsors

Isaac and Avery

Most of our family and friends know by now about the disease both Isaac (5) and Avery (3.5) are fighting.  Both boys were diagnosed with Fanconi Anemia (FA).  This is a very rare inherited disease that can lead to bone marrow failure and cancer as well as affecting other systems in the body. 


Both boys are affected physically in different ways and both are in varying stages of bone marrow failure.  Avery, the youngest, is in moderate bone marrow failure and will at some point in his life require a non-related bone marrow transplant.  Isaac, the middle child, was diagnosed with FA when he was almost 1 year old....four years later his numbers have dropped to the point that a bone marrow transplant is imminent. 


Eli, the oldest of the 3 boys, just turned 9 years old.  He is an amazing, compassionate older brother who is very willing to help his younger brother out...he will be Isaac's bone marrow donor.  However, he still cleverly negotiated a rate with his parents of $150 when the time comes for him to donate! :) 


Brian and Sultana are two amazing, positive parents who've been through many trials the last few years, with even more to come.  Despite the difficult hand of cards they've been dealt, they've persevered with the best of spirits.  They have also been supportive of many family and friends who've had their own trials.  Their 3 children are a reflection of their positive spirit and though crazy at times, it is a good crazy, full of life and joy!  They love everything superhero and can always be found in superhero costumes...or their whitey tighties.  


Some may think this family has the odds stacked against them but they take on the motto, "Life doesn't give us purpose.  We give life purpose. ~The Flash"