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Dec 10, 2018 Latest post:
Aug 28, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Sean (age 19) was born with a rare genetic disorder called Fanconi Anemia (FA). The disease is mostly know as a bone marrow failure disorder. The average age for bone marrow failure a for individuals with FA is seven. Most afflicted with FA require a bone marrow transplant before they reach adulthood. Fortunately for Sean, his bone marrow has remained relatively healthy. He has not required a bone marrow transplant and has been able to live an active fairly normal life. Unfortunately FA is really a DNA repair disorder. This means individuals with FA are much more likely to develop cancer than the general population. We have always worried that Sean may one day develop cancer. Unfortunately that day appears to have arrived.
One Friday December 7th, Sean was warming up for his basketball game at his High School Blessed Sacrament Huguenot (Go Knights!!!) when we was bumped and fell to the court. He struggled getting up and realized that he couldn't move his left arm or leg. After being helped to the bench, he returned to normal after 10 minutes. A doctor checked him out and he seemed to be fine. As a precaution we took him to the ER to have him checked out. An MRI revealed a mass and significant bleeding in his brain. We were transferred to the Neuro ICU at Johnston Willis Hospital for stabilizing and further testing. Our fight has begun.