Small Wonders

Faith and hope inspire the Dominicks as they cope with their sons’ illnesses.

ost parents don’t think much of it when their children bump into a door or trip over a pile of Legos. But those bumps and stumbles remind Jay and Betty Dominick that their sons, Boyce and Thomas, can’t see like the rest of us. Someday, both could go blind.

Most parents don’t worry too much if their kids aren’t as tall as their friends. They figure that a growth spurt is bound to come sooner or later. But for the Dominicks, the fact that their kids are small reminds them of the kidney disease that is stunting their growth and could eventually threaten their lives.

Boyce, who turned 10 on Feb. 28, is at the lowest end of the growth charts for his age. Thomas, 6, is the size of a 3-year-old. He slid off the growth charts years ago. The kidneys of both boys function at 40 percent to 50 percent of their normal capacity. By the time they are teenagers, the boys may need kidney transplants.

Jay Dominick is assistant vice president for information systems on the Reynolda Campus. Betty is a nurse with Winston-Salem Health Care.

As a result of an unfortunate collision of their parents’ recessive genes, Boyce and Thomas suffer from an extremely rare genetic disease, conorenal syndrome. The syndrome consists of a collection of ailments — retinitis pigmentosa, which gradually reduces the field of vision by destroying the retina and optic nerve; kidney disease; high blood pressure; and subtle skeletal changes.

Both boys see the world as if they were looking through a tunnel. When they walk, they don’t see the curb that might trip them or the toy they might step on. At night, they can hardly see at all. Doctors can’t say when or if they will eventually lose their sight completely.

The Dominicks got their first hint that something might be wrong on Halloween night, the year Boyce was 2. When they took him out for trick-or-treating, he clung to them, as if he feared the dark. He wouldn’t go up to a house by himself; one of them had to carry him. Boyce was 4 when Thomas was born. As Thomas grew, he showed the same aversion to darkness that his brother had. Both boys tripped and bumped into things.

In the summer of 1998, Betty decided to have Boyce’s eyes examined, thinking that if he needed glasses, he should get them before he started first grade. He didn’t like wearing glasses, and they didn’t seem to help his vision. One optometrist suggested that Boyce might benefit from seeing a pediatric ophthalmologist. The Dominicks weren’t prepared for what he had to say. Boyce had retinitis pigmentosa.

Shocked and grief-stricken, they set out to learn all they could about the disease. Jay used his computer expertise and searched for information on the Web. He and Betty talked to people with the disease. And they began to realize that Boyce could still have a successful, independent life.

As he worked through his grief, Jay spoke often to Sam Gladding, the associate provost and director of counselor education at Wake Forest. Gladding encouraged Jay to write down what he and his wife were going through. Jay set up a web site, http://www.wfu.edu/~jld/medical/conorenalmain.html,which tells their story.

Against the advice of some of their relatives, the Dominicks told Boyce that he had retinitis pigmentosa two years ago. His parents felt that he needed to have time to deal with and accept his condition, and Betty didn’t want Boyce to think he was a klutz. “There’s a reason he can’t catch a baseball,” she said. “He can’t see it.”

They suspected by then that Thomas, too, had retinitis pigmentosa. A doctor confirmed it soon after. The Dominicks wanted people to know what was going on in their family, but found it hard to bring it up in conversation. They found a way to spread the message and do something positive; they decided to hold a fundraiser for the Foundation Fighting Blindness, hoping to raise $10,000. “Night for Sight,” held in May of 2000, raised $75,000.

“When you stop and ask somebody for help and they go beyond your expectations—we still tear up when we think about what people did,” Jay said. Shortly after the fundraiser, the Dominicks learned about conorenal syndrome and that both boys had it. They felt blessed to have had time between the diagnosis of retinitis pigmentosa and conorenal syndrome. It gave them a chance to absorb the first blow before the second one hit.

Boyce is in fourth grade now. He loves school, and he makes good grades. But his limited vision sometimes gives him trouble. Last year, one of his classmates complained to the teacher because he bumped into her several times. The teacher had to explain. This year, his teacher allows him to dictate his spelling words to his mother because writing is hard for him. He is taking typing lessons.

Thomas gets teased about being small, and it makes him mad. He started taking injections of growth hormone last September, and he has grown an inch. His parents haven’t talked to him about his disease. The time is coming. Telling Boyce was really hard, Jay said, “and I dread telling it again.” Although he talks about his condition sometimes with his parents and his brother, Boyce doesn’t seem to dwell on what could happen in his future.

“He doesn’t see the magnitude of a kidney transplant down the road — surgery and meds the rest of his life,” his mother said. “He asks questions situationally.” She was driving down the road one night and Boyce said, “You know, Mom, I bet I’m not going to be able to drive at night.” Another time, he told his dad, “I’d like to see like you and Mom see, just for one day.” His statement brought his father to tears.

Betty sometimes cries in front of her sons. But she has a solution that keeps the boys innocent of her sorrow: “If I can just get out of their field (of vision), I can wipe my eyes without being too obvious,” she said.

The Dominicks have met many blind people who lead successful, fulfilling lives, and they are convinced that their sons can do the same. Jamie Dean, a visually impaired Wake Forest freshman, came to Boyce’s school and spoke at the beginning of the school year. The students got a kick out of meeting him and his “cool guide dog,” Betty said.

She and her husband are preparing their sons for the dark world they may someday live in. They keep the house unusually neat; they don’t leave things out that the boys might trip over. She is training them to pick up after themselves and to put their shoes in the same spot every night. She knows they will need those skills as they get older. “Teenagers can’t remember where they put their shoes, where they put their books,” she said. “And they can see to look for them.”

The Dominicks know blindness won’t kill their sons. But kidney failure could. They drink plenty of water and take good care of their kidneys, just in case they prove to be suitable organ donors. But even if kidneys are available for transplant when the boys need them, transplanted organs don’t last forever. A transplanted kidney usually lasts 10 to 25 years. The Dominicks don’t know if their boys’ problems will shorten their lives.

“We didn’t ask that,” Jay said. “We’re kind of afraid.” But they cling to optimism and put their faith in medicine. “Look how far we’ve come in 10 years,” Betty said. Every year, researchers come up with better procedures, better treatments.

“Probably our biggest optimistic hope is that we caught it early enough,” Jay said. “The path of progress in all these areas is so encouraging. “

-- Janice Gaston