Ethan was born in 2003. His first week of life was spent at Dallas Children’s Hospital undergoing tests that concluded with diagnosis of Neurofibromatosis Type 1. Like many NF patients, Ethan has been through CT scans, MRIs and various surgeries. This included the removal of his right eye. As parents, having a child with an unpredictable genetic condition is often a very difficult journey that stretches the emotions, heart and mind beyond capacity. Through it all, Ethan has taught us many lessons with his cheerful attitude and love for life. We are sustained by our faith in the Lord, and the constant support of family and friends. We are also grateful for skilled and caring medical people.
Ethan has an annual MRI as well as neurological, optometric and craniofacial surgical assessments. Since he was born, Ethan has been taking nutritional supplements. In 2011, Ethan underwent surgery to de-bulk the large tumor on his right eye lid. The surgery really helped Ethan functionally and cosmetically. Other than necessary monitoring, we have been committed to a non-invasive medical approach.
People who encounter Ethan, especially children, often ask questions about his condition and why he looks distinctive. This has caused us to consider how we should respond to this attention. We decided to write a card explaining basic facts about NF1 and how we respond to the condition. We have passed out thousands of these cards in multiple languages and we have seen an increase in awareness, understanding and empathy.
Ethan is homeschooled and doing work at an advanced level; he especially enjoys doing math. He has also been playing the violin for the past 7 years taught by his sister, Naomi.