I am a single mom of the two beautiful boys beyond, Ayrie (4) and Shiya (2). Just before Ayrie’s second birthday, we received news that totally changed our lives. Ayrie was referred to an ENT who diagnosed him with JORRP: Juvenile-onset Recurrent Respiratory Papilomatosis. It’s a rare disease that is caused by the HPV virus which causes benign tumors to grow on the vocal cords. There is no cure, only surgical removal of the tumors. If left untreated, the tumors will block the airway and cause suffocation. JORRP is often misdiagnosed as croup, asthma or pneumonia and we are lucky that it only took about 6-months from the onset of symptoms for Ayrie to receive a diagnosis. I began the journey as many families do. Intensely reaching out for help and feeling just as intensely alone regardless of how much amazing support I received. I lost myself in research and had a driving need to ‘do’ something. But short of quitting my job to make sure I could meet his care needs and flying 1200 miles to get the best medical care, there is not much I can do. Two years and 19 surgeries later we are still quite immersed in a world dominated by my son’s chronic illness.
Ayrie & Shiya Murphy
The beauty in the situation is the strength that my friends, family members and I have derived from banding together to support Ayrie, me and Shiya. I hope that Tombolo can help other people grow stronger in the face of chronic conditions.
I hold a MA in research methods (2005) from the University of Pittsburgh’s School of Education and am currently pursuing my doctorate in Family, Youth and Community Studies at the University of Minnesota’s College of Education and Human Development. I have previous experience as a Regional Program Manager for the national non-profit the Student Conservation Association, as the Director of Assessment and Evaluation for the Perspectives Charter Schools in Chicago, IL and as a high school math and science teacher. My curriculum vitae can be viewed here.
I also maintain a blog, Rare Disease Support.
