I was raised to believe everything happens for a reason. But when I began losing my vision 4½ years ago, I remember thinking there will never be an acceptable reason for this.
The cause of my vision loss went undiagnosed for three years, with top doctors unable to fully explain why I was losing my sight. The journey of vision loss is terrifying, but not being able to understand why it was happening made it even harder for my family and me.
Then I was introduced to the Foundation Fighting Blindness. The foundation “family” instantly gave my husband, Dominick, and me a new level of strength, support, and purpose. Our first foundation event was its Philadelphia VisionWalk, and we’ll never forget that important day. For the first time, we didn’t feel alone.
The foundation opened many doors for me, the most important one being the Scheie Eye Institute at Penn Presbyterian Medical Center. There, I met Alexander Brucker, who used an imaging diagnostic tool called optical coherence tomography angiography to finally diagnose my condition.
The scan allowed my medical team to see actual pictures of my inner retina; they found a large area of obstructed blood vessels. We learned that my blood can’t properly flow through my retina, causing the blind spots that were severely limiting my vision. This obstruction is referred to as capillary nonperfusion, or macular ischemia. Even though there isn’t yet a cure or treatment for my condition, we finally understood what was causing my blindness.
Losing one’s vision takes a lot away, but the Foundation Fighting Blindness has given me a lot back. It provides a platform for me to use my voice to raise money and awareness of inherited retinal diseases. It also supports the research that gives the 10 million-plus Americans affected by vision-robbing diseases the hope of a cure. This led my husband and me to create our own fund-raising event, the SeeShore Fest. Our third annual gathering was held in August and raised more than $11,000.
On Saturday, the whole family will participate in our third Philadelphia VisionWalk. The 5K walk will start at 8:45 a.m. at Independence National Historical Park. Our goal is to raise $226,000 to support vision-saving research.
Though I still may not have a true reason for my life’s unexpected turn to this journey of vision loss, it has taught me to take time every day to truly see all the important things that make up my life. That includes being able to spend more time with my two incredible kids, Daxton and Laityn, and moving closer to my parents so they can help out with the things I can no longer do. And meeting some of the hands-down most incredible and inspirational people that only this journey could have led me to.
Heather Napolitano is president of the Philadelphia chapter of the Foundation Fighting Blindness. For more information about the foundation, visit www.FightBlindness.org. For more information about the Philadelphia VisionWalk, email Debbie Hayter at DHayter@FightBlindness.org.