As shared in the previous post, we elected to have Helen have the genetic test for Neurofibromatosis Type 1 (NF1) at our January 31st appointment with Dr. Korf. We received the results of that test today confirming that Helen also has NF1. This means that both Helen and Philip, Jr. have a 50% chance of passing NF1 on to their children, something we have not yet even begun to wrestle with as parents ourselves.
Our next step is to repeat the same diagnostic appointments Little Philip had when he was diagnosed in 2011. Helen will have a complete eye exam to rule out optic glioma tumors. None were found in Little Philip which means it is highly unlikely that he would develop them in his lifetime since these types of tumors are almost always present from birth and manifest themselves in very early childhood. Prayer number one: that the same outcome will be found for our Helen.
Helen will be examined at the UAB Genetic NF Clinic for a baseline evaluation. We plan to aggressively push for a baseline head/neck MRI to rule out tumors. Prayer number two: that the doctors will agree with this decision and that the results will show no tumors.
Prayer number three is that Philip and I will be able to calm our anxiety and fears for both of our children, and remain steadfast in love and faith that God has His hands on our precious children and on our family.