At age 4, Molly Burke and her family learned the devastating diagnosis: retinitis pigmentosa (RP), a genetic eye disease that leads to blindness. “Sometimes it seems I’ve been involved with the Foundation Fighting Blindness my whole life,” says Molly. When she was little, she spoke publicly about her eye disease, about the need for research, and about how she might lose her sight someday. “But I didn’t actually know what that meant for my life,” she said.
At 14, Molly’s world started going dark – fast. By age 16, she was almost completely blind. Once Molly started losing her vision so rapidly, the reality sank in. “I realized I’d never drive a car, never pick out my wedding dress, never see my kids smile someday,” she said. “I began wrestling with depression. I felt like I didn’t know who I was anymore, or what I was going to do with my life.” It was a very difficult time for Molly – a time when she desperately needed the hope she found through the Foundation. That support changed her life. “I remember that I was angry and frustrated. Since I was 5 years old, I’d been advocating for research. But what had it done for me? Where was my sight? Where was my cure?” said Molly.
Then one day, at a Foundation event, her mom asked the researcher sitting across the table about the necklace she was wearing. The researcher kneeled next to Molly. She took Molly’s hand, put it on her necklace, and traced the letters H-O-P-E. The researcher told Molly that she wears the necklace every day as a reminder: even though she’s been searching for this cure and hasn’t found it yet, she’ll never give up hope that one day she will.
“That was the first little piece of my healing after vision loss,” said Molly. “I realized that, yes, I had lost my sight. But even more than that, I had lost my hope. And I had to get it back.” Molly connected with a community committed to a future without blindness. She met other youth living with vision loss. She re-discovered her voice and started motivational speaking and blogging. And she helped fundraise for vision research.
”Today’s amazing research breakthroughs are fueling my absolute belief that there is going to be a cure in my lifetime,” said Molly. “Just last year at a Foundation event, I was so excited to hear Orly Shamir speak about her new experimental bionic eye!” The bionic eye, or Argus II retinal prosthesis, is undergoing clinical testing at Toronto Western Hospital. The ground-breaking project is being led by celebrated researcher/clinician, Dr. Robert Devenyi, and is funded, in part, by the Foundation Fighting Blindness.
It is only one of many promising research advances Foundation supporters have made possible. New gene therapies to correct genetic defects may one day prevent people diagnosed with RP from ever losing sight. And cutting-edge stem cell treatments could restore vision one day.
“My parents raised me to be a fighter, and today’s advances only make me more determined to keep fighting for a cure,” said Molly. “I want a cure for me, but even more, I want one for the ‘Mollys’ of the future… so that maybe one day, no one will have to face the depression, the grief, the loss of hope that I did,” said Molly.
Molly’s inspiring journey gives us all a reason to celebrate how our community is making a difference.