Your Community » Stories of Hope
Finding Hope for the Future
“It was devastating to learn that this disease was progressive and at some point, Connor would lose more of his vision,” remembers Sandra. “We started thinking about the future and what we could do between now and then to aid him.” After Connor’s diagnosis, Henry and Sandra began researching online for more information on Stargardt. “That was scary in itself because the information on the internet can be overwhelming. We didn’t know what was accurate or inaccurate, and nothing we were reading was very positive,” says Henry. With thorough research, Henry found the name of one of the world’s leading researchers in the area of Stargardt disease, Dr. Marco Zarbin of the University of Medicine and Dentistry of New Jersey. Dr. Zarbin graciously took the time to answer Henry’s questions about Connor’s condition and also told him about the Foundation Fighting Blindness. As a member of the Foundation’s Scientific Advisory Board, Dr. Zarbin knew the important role the Foundation plays for many families facing the challenges of living with a retinal disease.
They find their leadership roles within the chapter to be very rewarding; they are happy to be a point of contact for people in their area who have just been diagnosed and are looking for more information. It’s also important to them to be so close to the research that the Foundation is funding and reporting out on. “FFB gives us the feeling that we are doing something about Connor’s vision loss, and enables us to help those that are doing the research, so we don’t feel so helpless,” says Henry. “It’s good to know that FFB is right in the thick of today’s cutting-edge research. We already see some light at the end of the tunnel, and that’s promising.” The Wongs try to help Connor in any way they can. Not only does he have parental support, but his younger brother Jordan has been very supportive and understanding of Connor’s condition, and looks up to him. Connor is learning Braille because reading large print can often be very strenuous on his eyes. Henry and Sandra bring him along to Foundation and other events dealing with retinal disease research and low vision resources. The whole family has also been participating in the Bay Area VisionWalk for the past few years. “Connor copes very well,” says Henry. “He has grown with it and adapted. He’s pretty courageous.” Today, Connor is 12 years old. He is on the honor roll, a student ambassador at his school, on the basketball team, and plays piano. “We find his accomplishments very impressive, especially since he has a visual impairment,” says Henry. “We admire and respect him.” |
|||||||
