Your Community » Stories of Hope
Committed to Finding a Cure
|
When Lori and Kevin Marsh’s daughter Megan was nine years old, she started struggling with her vision. Their family eye doctor thought Megan had an eye muscle problem and gave her a prescription for glasses with bifocals, but her vision only got worse. The Marshes took Megan back to the eye doctor and this time the diagnosis was devastating: Megan was going blind. The nurse directed Megan and her family to Wills Eye Hospital in Philadelphia. There, a doctor informed them that Megan had Stargardt disease, a retinal condition that would progressively steal more and more of her vision. Having never heard of Stargardt disease, or even met a blind person, the news was a lot to process. “When the doctors said blindness, I imagined total darkness. I didn’t realize there were different diseases that cause varying levels of vision loss,” says Lori.Lori and Kevin explained to Megan that she had a disease that would make her vision blurry. They took her to see a low vision specialist and equipped her with the technology she needed to continue with school and do the things she enjoyed. Though Megan’s diagnosis was initially very hard on the family, Lori ultimately decided not to dwell on it. Instead, she took action. She started searching online for different resources and came across the Foundation Fighting Blindness. She contacted her local director of development, Judy Price, who invited Lori and the family to join her and the Foundation’s Board of Directors on a tour of the Scheie Eye Institute’s research laboratory facilities at the University of Pennsylvania. “We got to meet the researchers and see all the work they were doing, which was really interesting,” says Lori. “It was also exciting to meet some of the board members.” Lori fondly remembers meeting Gordon Gund, chairman and co-founder of the Foundation. At the time, the Philadelphia Chapter of the Foundation had gone dormant, so the Marsh family along with others in the area revived the chapter and started holding regular meetings again. Lori and her family have been attending meetings ever since; she is now even the membership chair for the chapter. “We are just trying to raise as much money as we can for a cure for Megan, and we’ve made some awesome friends along the way,” says Lori. Megan’s vision is currently 20/200, but she maintains a positive attitude. She uses a CCTV, a video camera that projects a magnified image onto a TV screen, for reading and school work, and is also learning to read Braille, which she loves. She even participated in a Braille reading competition recently. Megan also enjoys talking to other children who have been recently diagnosed and have come to the Philadelphia Chapter looking for support. In addition to her leadership role within the chapter, Lori has taken on the position of family chair for the Philadelphia VisionWalk. She and her family send out emails and post flyers around their neighborhood to spread the word and fundraise for their VisionWalk team, Team Megan. They also hold charity nights at local restaurants where a portion of the proceeds goes toward their walk. Lori stays involved because she is committed to helping the Foundation fund the research that could save her daughter’s sight. “The research is very promising,” says Lori. “The clinical trials are exciting and I truly believe they’re going to find a cure for these diseases.” |
