The parents of young children affected by retinal diseases walk a fine line – between making the best of a trying situation and preparing for the worst.
The parents of young children affected by retinal diseases walk a fine line – between making the best of a trying situation and preparing for the worst. “He knows that he has it,” Serena Jenkins says of her 8-year-old son, Aidan, who was diagnosed with retinitis pigmentosa, or RP, three years ago. “But we haven’t told him yet that one day he’ll go blind. We just tell him it’s going to get harder and harder to see. Because we don’t want to scare him. He’s so young, you know?”
RP is a genetic degenerative disease that causes progressive vision loss. In Aidan’s case it is X-linked, meaning that the women in Serena’s family are carriers, and only males are affected. “My grandfather had it and a few first cousins do,” Serena says. But the disease’s onset and its effects are often as unique as the person affected.
“With my grandfather, he was older, in his forties, when he started going blind,” says Serena, who lives with her husband, Darren, and their three children in Morgan Hill, California. “But a couple of cousins were diagnosed in their twenties, and they’re now in the forties, both legally blind. One is a tri-athlete. He really takes care of himself – eats really good, doesn’t drink alcohol. He’s actually done the Iron Man competition in Hawaii three times. He’s an inspiration.”
As is the Foundation Fighting Blindness. Serena came across its website while researching RP, and, starting in 2009, she and Darren began participating in the Bay Area VisionWalk, the Foundation’s signature 5K fundraising event. They also created two annual events on their own – a dinner-and-auction at a local winery and a poker tournament – which, collectively, have garnered more than $34,000 for the Foundation.
“The Foundation gives us something to hold onto,” Serena says. “We felt lost in the whole diagnosis, thinking, ‘OK, there’s nothing we can do.’ But with all the fundraising and community events and the information about research the Foundation provides, it’s a way for us to get involved, so that we feel there’s something we can do for Aidan.”
Relatively speaking, Aidan is doing fine. He has to wear glasses and sit close to the board in his 3rd grade class, but, otherwise, he’s doing the typical things 8-year-olds do, according to Serena. “There is some peripheral vision loss and some night-blindness,” she says, adding that, as far back as his toddler years, she remembers Aidan being what she thought was just “clumsy.” His 6-year-old brother, Andrew, in comparison, doesn’t have any of the same issues, and his eyes have tested fine, thus far. Their third child, 16-month-old Evelyn, could be a carrier but is in no danger of being affected by RP.
“I do keep an eye on the research the Foundation’s funding,” Serena says, “because Darren and I think a lot about Aidan’s future. We’re very encouraged by the clinical trials going on right now, and if we see something Aidan might be able to participate in, we’ll ask him. It’ll have to be his decision.”
Meanwhile, the Jenkinses, whose families have lived in Morgan Hill for generations, rely heavily on family support, including words of wisdom from the tri-athlete cousin on the subject of stockpiling visual memories. “Right now, I want to show Aidan everything,” Serena says. “I want him to see the stars and the beautiful scenery. My cousin says that, how Aidan can picture things, when people say to him later, ‘Oh, it’s a beautiful sunset,’ is he can go back in his memory, and think about a beautiful sunset. I want Aidan to have these memories, see as much as he can while he can.”