My 3 year old son Cyrus is one of the almost 2 million children worldwide affected by a visual impairment. Cyrus was born a genetic disease known as familial exudative vitreoretinopathy (FEVR). FEVR is a hereditary disorder that affects the retina with symptoms that include vision loss or blindness, retinal detachment and strabismus. Cyrus is impacted by all of these impairments.
In 2017 we brought Cyrus to BCH, a Harvard Medical School affiliate ranked # 1 pediatric hospital by US News & World Report, to meet with Dr. Yoshihiro Yonekawa, BCH’s Director of Pediatric Retina Surgery, and his team. There, we learned more about the disease, its impact on Cyrus’s current vision, the recommended treatment and the “vision” for the future.
This visit was invaluable to all of our wellbeing—the knowledge, resources and recommended treatment protocol received from this amazing team empowered us with the hope that Cyrus will live a happy, fulfilling life with or without full vision. We now travel from Naples, Florida to Boston, Massachusetts biannually to monitor Cyrus’ s situation and to discuss further state-of-the-art treatments for FEVR with this amazing team.