Son’s Failing Sight Spurs Mother’s War on Disorder

The darkest day of Helen Harris’ life was not the day she learned that she has a rare disorder that might lead to total blindness.

The day came in 1973, when her 10-year-old son, Jimmy, came home bruised and crying on Halloween after trick-or-treating in the family’s Woodland Hills neighborhood.

“He had tripped over something that he hadn’t seen and fallen and the other kids had laughed at him,” Harris recalled. “Then someone had stolen his bag of candy and he couldn’t see in the darkness to chase them.”

Jimmy wiped at the tears that night and looked up at his mother. “I’m like you,” he said.

Those three words launched Harris’ international fight against retinitis pigmentosa, a hereditary disease of the eyes that affects 400,000 Americans. As the retina slowly degenerates, it loses its ability to transmit pictures to the brain.

Harris had learned about her own condition when she was 22. During a visit to a friend in a hospital, Harris commented on her symptoms in front of a doctor. He examined her and diagnosed retinitis pigmentosa and indicated that it was a rare disorder.

“(Jimmy’s) comment that night was like a sword right through me,” Harris said. “I’d dreaded Halloweens all my life as a kid because I couldn’t see at night. But all along, I’d thought it was just something unusual about me . As soon as he said it, I knew it was a disease and not some rare thing.”

Eye Exams for Sons

The next day, she took Jimmy and her other two sons to an eye doctor. Tests showed that Jimmy and brother Richard, 8, had the disease. Another son, Bobby, then 14, was found to have normal vision.

Panicked by the diagnosis, Harris sought information and possible treatments that might be available for her boys. She was dismayed to find that little was known about the disease, and apparently, little was being done to cure it.

“I wondered, how can this be such a ‘rare’ thing if three of the five people in my own house have it,” she said.

Harris’ curiosity led to a grass-roots educational campaign that was run at first from her kitchen and has blossomed into RP International. This year, the Woodland Hills-based organization will raise about $300,000 for research, and will also offer moral support for victims. Harris, 48, is president of the organization.

Slow Degeneration

Many victims have not yet discovered that they have the disease, Harris said.

“People who have it can think that everybody sees the way they do,” she said. “They’ll have gun barrel-type eyesight, like looking through two straws. The earliest symptom is difficulty seeing at night. Then comes a reduction in side vision.”

Ironically, most people with retinitis pigmentosa can “read the eye charts perfectly,” Harris said. Thus, some victims in the early stages of the disease do not know to take precautions to protect their eyes from such things as dangerously bright light.

For most of her adult life, Harris’ eyesight was sufficient for her to see an area of about five degrees in front of her. Normal peripheral vision covers a 180-degree span.

Over the last few years, her field of vision has shrunk to two degrees.

Last year, she went totally blind in her left eye. “It just got whiter and whiter,” she said.

Harris acknowledged that the probable loss of her right eye’s limited sight is “absolutely terrifying” to her. The fear has led her to anxiously look for additional volunteers to help run her small organization.

To compensate for her failing sight, Harris uses a desk-top closed-circuit television camera system to enlarge writing so she can read correspondence that comes into RP International’s Ventura Boulevard headquarters.

As the unpaid president, Harris answers most letters herself. She also maps out the group’s annual television informational and fund-raising telethon and lines up celebrities to help draw attention to the need for retinitis pigmentosa research.

Last year, Bob Hope hosted the telethon, which was seen over 25 television stations in the United States. It raised $287,000, and volunteers staffing phones answered hundreds of inquiries from people wondering whether they might have the disease and, if so, what they could do about it.

Mimeograph Effort

That is a far cry from Harris’ first effort at explaining the disease and the problems facing those who have it.

“I made up some little mimeographed brochures and took them to a Woodland Hills Chamber of Commerce meeting in 1974 and gave a little talk,” she said. “But after the meeting, I looked on the tables. I saw all of the little brochures that had been left behind. They had drink glass circles on them.

“I thought, ‘Three hundred people here, and not one of them cared.’ ”

A Chamber of Commerce official took pity on Harris and invited her to another meeting. On her return visit, the manager of a Woodland Hills department store struck up a conversation with her. He agreed to stage an art auction and fashion show for her fledgling retinitis pigmentosa group.

Harris said she learned how to write press releases when she called a television station to ask for publicity for the event. “A guy at the station spent 30 minutes on the phone with me telling me what facts to put in it and where to send it,” she said.

Charlton Heston Helps

The 1974 department-store event eventually raised $4,000 after actor Charlton Heston and his wife, Lydia, volunteered to help. The Hestons have remained active in the fight against the disease.

The success gave Harris new courage. When aides to Mayor Tom Bradley told her that he was too busy to attend the group’s first fund-raising dinner, she tracked Bradley down at an unrelated speaking appearance.

Harris stood in line to shake the mayor’s hand after his speech. When her turn came, she blurted out a personal invitation: “I am going blind and so are my children. I need you to move a mountain for me.” Bradley went to the dinner.

The fund raising has helped support research into such things as eye implants and genetic engineering that might prevent retinitis pigmentosa. Harris’ group has also worked to persuade optical companies to develop such things as wide-angle attachments for eyeglasses to expand the narrow field of view for those who have the disease.

It has also lobbied health insurance companies to cover the cost of devices such as electronic night-vision scopes. Retinitis pigmentosa victims are virtually blind at night, and the scopes, originally developed for use in Vietnam and costing about $2,700 each, allow them more vision.

Harris is confident that a cure for retinitis pigmentosa will be found. “It’s not going to stay that way for long. I know now it’s in the hands of God. I’m drawing on that, no matter how corny it sounds.”