Meet Owen

During Owen’s 20-week anatomy scan the doctor noticed an abnormality in his brain. To say that his parents were blindsided and afraid was an understatement. With this being their first child, this proved to be an even more challenging time. A few days after he was born, additional lab testing and an MRI was completed. Shortly after, he was diagnosed with Wilm's Tumor, aniridia, various other abnormalities, and developmental delays (WAGR). A combination of two or more of these conditions is usually present in most individuals with WAGR syndrome. WAGR syndrome is a rare genetic disorder with an estimated prevalence of 1 in 500,000 to 1 million people. Due to its rarity, their neonatologist was not familiar with this disorder. With tears in her eyes, she explained what was in store for his lifelong medical journey.

This journey began with a team of physicians collaborating to navigate this unknown territory. Owen has been subjected to multiple rounds of labs, ultrasounds, MRI's, surgeries, and various therapies. He continues to be seen by a wide range of specialists that keep his schedule very busy. With the guidance and support of his medical team, he has learned to walk without an assistive device, write his name with the help of a light table, improve the curvature in his back through hippotherapy, and master the use of his school accommodations for his low vision. 

Owen’s journey inspired his neonatologist to create a continuing education seminar to spread awareness of WAGR Syndrome in her community of physicians. He was also invited by his geneticist to speak to first year medical students at the University of Toledo.

Owen continues to thrive and be a typical 11-year-old! He enjoys riding his bike, participating in swim class, wrestling, and spending time with family and friends.