Ryan Origaen's only chance for a normal life rests with a surgeon in Texas. But the parents of the 18-month-old boy from Silver Spring can't afford the air ambulance needed to fly him there.
So a Baltimore organization, Roads to Recovery -- founded by a local couple in memory of their 9-year-old son who died of cancer -- has stepped in to help, donating money it won this month in a national contest for volunteerism.
"This child shouldn't have to die because he can't get this money," says Mike Polk, who with his wife, Della, started Roads to Recovery in 1990 to provide travel expenses for families whose children need specialized treatment.
The only surgeon who can cure Ryan, born with a deformed rib cage and curved spine, is in San Antonio. And the only way the boy, attached by a 4-foot tube to a respirator, can get there is by jet-airplane ambulance -- which costs an estimated $16,000.
Roads to Recovery has donated $1,000 for the round-trip transport. That money came from a $10,000 J. C. Penney national-volunteer award, which the Polks received Sept. 11 at the retail chain's headquarters near Dallas.
When Ryan Origaen (pronounced oREEgan) was born March 10, 1994, "we were the happiest family of all," says his mother, Elsa. "But then they took my baby, and a doctor came back and looked at me like my baby was already dead."
The doctor explained that Ryan has scoliosis, or curvature of the spine. That was serious enough, but three weeks later doctors also discovered that Ryan's left rib cage is severely deformed, compressing his left lung so it can't inflate on its own.
To save Ryan's life, doctors inserted a tube into his windpipe and connected the tube to a respirator. The respirator has kept him alive for a year and a half.
Ryan is almost always attached by this 4-foot tube to his respirator. He is remarkably adept at not tripping on the tube as he heaves a ball into a chest-high basket in the living room of his modest home. He has big brown eyes, curly brown hair and the round, pudgy cheeks of a child well-cared-for.
Yet Ryan requires nursing care 16 hours a day -- paid for by his parents' insurance company, Aetna. But Aetna doesn't pay for the respirator and related equipment, which cost $1,100 a month. The Origaens can afford only $300 a month. They figure they owe $12,000 in back payments.
Despite the attention Ryan requires, both parents continue working for the U.S. Postal Service in Montgomery County. Walter Origaen, 41, delivers mail six days a week; Mrs. Origaen, 36, works as a mail handler five evenings a week. They earn too much to qualify for state or federal assistance.
"I take my hat off to them," says Valerie A. Cummings, owner of Unique Nurses, Ryan's nursing service. "They literally work, eat, sleep and take care of Ryan. It's one helluva rough lifestyle."
Their one hope rests with Dr. Robert M. Campbell, a pediatric orthopedist at Santa Rosa Children's Hospital in San Antonio.
He says that probably sometime next month -- a date has not been set -- he will attach a titanium rib prosthesis to Ryan's left rib cage. The prosthesis is designed to push the ribs near the shoulder away from the ribs at the waist. This, the doctor says, will enlarge the left-lung cavity allowing the lung to function and at the same time straighten the curved spine.
Although it sounds simple, Dr. Campbell says, he is the only surgeon performing the operation -- 22 times since 1989 with "remarkable" results. It should allow Ryan to develop normally, he says.
Dr. Peter F. Sturm of Children's National Medical Center in Washington says that Ryan's only other option is a spinal fusion. But that, Dr. Sturm says, would stop the spine and the chest from growing and "condemn Ryan to slow respiratory demise."
The insurance company has agreed to pay for the surgery but not transportation to San Antonio. Relatives of the Origaens as well as their church are trying to raise money. Even Aetna has appointed a registered nurse in its "patient advocacy program" to help find funds.
Mrs. Origaen has called charitable organizations, politicians and government agencies, but only Roads to Recovery agreed to help. She says she is embarrassed by "begging" and tired of hearing herself talk.
"I feel like I'm not Ryan's mother anymore. I'm his lawyer," Mrs. Origaen says. "But we've got to get him to Texas. I think we owe that to Ryan. It's his last hope, the only hope he has to get well."
Roads to Recovery
Della and Mike Polk understand the Origaens' quandary only too well. Their 9-year-old son, Chris, died of cancer in 1990 after trips to Seattle and Lexington, Ky., in search of a cure. With $1,638.02 -- funds given by others to a trust fund for Chris -- his parents founded Roads to Recovery.
They run it out of their rowhouse in a working-class neighborhood of Southwest Baltimore. Mr. Polk, 37, is sales manager for an export company. Mrs. Polk, 35, stays home to raise their two children, Brian, 8, and Julie, 10.