In Their Own Words: Jason James "JJ" Ferreira, 3, Manhasset Hills, New York
Disease: Leber congenital amaurosis (LCA), a retinal degenerative disease characterized by severe loss of vision at birth.
Family: Jason (father) and Jennifer
Diagnosis: We found out about JJ’s LCA when he was 5 months old. Before that, we saw that he wasn’t tracking objects with his eyes. So we took him to an ophthalmologist, who said there was something wrong with his retina. She then referred us to a specialist who conducts an electroretinogram, or ERG, where wires are connected to contact lenses put on the eyes, which are held open with metal clasps. Lights are flashed, to measure the reactions. As parents, seeing this done to a 5-month-old – dilating his eyes, forcing them open, and holding him, having him screaming; it broke our hearts in pieces.
The doctor delivered the diagnosis in a horrible way. He told us, after the test, “Prepare yourselves to raise a visually impaired child. Get him a guide dog.” He just threw all these things at us. Maybe he does this all the time, and is insensitive to it. But for us, it was a shock. And the doctor didn’t give us any hope. He told us there is no cure, no type of therapy available, no type of treatment.
JJ’s Vision: We know he sees sharp contrasts and is even able to identify shapes, certain letters he has learned and objects he is familiar with. He doesn't usually bump into things or trip over objects. He has difficulty in bright rooms or when objects don't contrast with the background or floor. He doesn't like bright light or sunlight, which cause him to squint a lot.
Getting Involved with FFB: The day of JJ’s diagnosis, we contacted the Foundation’s New York office and, right away, we could feel the warmth over the phone. They told us about the research going on, the clinical trials for LCA, and how we’re not alone. Soon, we got involved with the Long Island VisionWalk, where we met so many great people. We decided, after that, that we need to find ways to help our son and others like him. So we’ve dedicated ourselves to the Foundation’s mission.
We’ve helped raise more than $20,000 for VisionWalk. We held two “Pitching for a Cure” events at Yankee Stadium, raising about $70,000. And we've held two dinners, with support from the supermarket industry, called “Una Vision Para El Futuro,” or “A Vision for the Future.” It raised $225,000 the first year and $450,000 the second year, with 400 and 600 attendees, respectively. We were also named National Trustees last year. The Foundation encourages everyone to get involved, in whatever ways possible.
The Future: For now, and in the immediate future, JJ will need some sort of guide, to watch out for him. As he gets older, he may not need that, except in places he’s not familiar with. We’ve noticed that, once he gets a pretty good blueprint for a location, he has a feel for where everything is. In that sense, he will develop some independence. But he won’t be driving, and he’ll probably need a cane and maybe a guide dog. We’re fighting for a cure, but we are raising him as someone with a visual impairment.