A Morgan Hill family who has been afflicted by generations of
degenerative blindness is eager to find out more about the cause
of, and hopefully discover a cure for retinal diseases which affect
more than nine million Americans.
Morgan Hill
A Morgan Hill family who has been afflicted by generations of degenerative blindness is eager to find out more about the cause of, and hopefully discover a cure for retinal diseases which affect more than nine million Americans.
Serena Jenkins lists a grandfather, six cousins, and her 5-year-old son Aiden among her relatives who suffer from retinitis pigmentosa (RP), a hereditary disease that, over the course of years or decades, is characterized by the gradual loss of vision.
Interested in how this condition has affected her family history, Jenkins and her family have organized a fundraiser at Hecker Pass Winery in Gilroy to benefit the Foundation Fighting Blindness. The fundraiser May 30 will include dinner, an auction, door prizes, a live band and dancing, Jenkins said.
Foundation Fighting Blindness is a national organization that conducts research in search of a cure for RP, macular degeneration, Usher syndrome and other blinding diseases.
Jenkins, a 35-year-old fifth generation resident of Morgan Hill, said the disease starts with a slow loss of peripheral vision that over time leads to “tunnel vision,” causing adult sufferers of RP to be able to only see what is directly in front of them.
“Your vision just closes in, and as you get older you can become completely blind,” Jenkins said, noting that only the males in her family are affected by the disease, while females, including herself, carry the trait that is passed along to the next generation but do not show symptoms. She said her son wears glasses now, and is unable to see near his feet while looking straight ahead.
RP also eventually leads to a loss of night vision, near-sightedness or far-sightedness, and adverse effects on depth perception and color perception.
Jenkins’ cousin, Maverick Malech, was diagnosed with RP and a “small strain” of macular degeneration, a similar degenerative disorder, in 1997, he said. Now 43, Malech literally hasn’t let his loss of vision slow him down, as he has completed three Iron Man triathlon competitions, most recently in 2008.
Malech, a Salinas resident who works in Morgan Hill as a real estate sales agent, will speak at the May 30 fundraiser.
He said last week he didn’t realize he was losing his vision more quickly than normal until he was involved in a series of auto accidents that happened within months of each other in 1997. One of those accidents almost killed him, he said, and he attributes all three incidents to the fact that his blindness crept up on him over the previous years.
Having been diagnosed with RP and now legally blind, Malech stopped driving. His wife, who is also his co-worker in Morgan Hill, now drives him to work every day. And while the disorder skipped his teenage son, his daughter is an RP carrier.
Although Malech played football at Live Oak High School and in college, he admits he likely would not have started competing in triathlons if not for his RP diagnosis.
“Before this came about I probably would have never done anything like (triathlons),” Malech said. “(Before the diagnosis) I would rather have sat and watched a football game than go bike 100 miles. There’s nothing in life that can hold somebody down, and just because you have a disability or challenge there’s nothing that somebody can’t do.”
Jenkins added that she has received eager support for the May 30 fundraiser, with local individuals and businesses providing “cool donations” for the auction, such as a weekend getaway to Lake Tahoe, a hunting trip, photography and other artwork, and an autographed 49ers football.
Hecker Pass Winery is located at 4605 Hecker Pass Highway, Gilroy, CA. The fundraiser will start at 6 p.m.
For more information or to purchase tickets, which cost $45 each, call (408) 776-5131, or visit the web site www.fightblindnessfundraiser.com.
