Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: THURSDAY, March 16, 1995 TAG: 9503180003
SECTION: NEIGHBORS PAGE: W13 EDITION: METRO
SOURCE: BETSY BIESENBACH STAFF WRITER
DATELINE: LENGTH: Medium
It's hard to believe that in his short life, Andrew has undergone 12 operations. Even now, he has to live with drainage tubes in his ears and in his back, from which he had a cyst removed in December.
Andrew has a condition called VATER syndrome. It is not a disease in itself, but a collection of anomalies that occur in about one out of every 3,500 children. The syndrome causes deformities of the vertebrae, anus, trachea, esophagus, the renal system and the radius bone of the arm. Luckily, Andrew has only a few of the 18 defects associated with the syndrome. Many children with severe cases die shortly after birth.
Andrew's biggest problem was an imperforate anus. His rectum was too short, and there was no opening from it outside his body. In October 1992, shortly after he had surgery to correct the condition, this newspaper ran a story about him and about his family's efforts to raise funds for his medical costs.
Before his birth, both of Andrew's parents worked, but after he was born, his mother, Ami, had to quit working to take care of him. His father, Mark, worked several jobs to pay for expenses that were not covered by insurance, which amounted to nearly $50,000.
The family's income was low enough that Andrew qualified for Supplemental Security Insurance payments, but high enough that when Mark worked overtime, their eligibility changed, and the payments were cut in half.
The family had to file so many appeals that "it was a hassle," Ami Donahue said at the time. "It just wasn't worth it."
Andrew's family raised money through bake sales, yard sales and donations. After the newspaper story appeared, several thousand dollars more came in, and the family received many phone calls and letters of support.
Shortly after the story appeared, the fund-raising efforts stopped. Andrew was declared disabled and was eligible for Medicaid and SSI payments. He doesn't get the maximum benefit, Ami said, "but it helps."
These days, Mark is working just one job. Because of Andrew's many doctor's appointments and surgeries, Ami can't work much, but she does help her brother with his business once in a while.
Bradley and the other children, 19-month-old twins Codey and Kiersten, are covered by their father's insurance policy at work, so the medical bills are no longer piling up.
But the money that was raised made all the difference in the Donahues' life, Ami said. Neither she nor Mark remembers how much was raised, but it was several thousand dollars and "we used up every bit of it," Ami said. It was enough to pay off all of Andrew's outstanding bills.
Without the help they received, "I don't know what we would have done. We would have lost what little we had," Ami Donahue said. "We're really grateful."
Although they are out from under the staggering medical bills, life still is "really tough" for the family, Ami said. Andrew's doctors are waiting to see if his new anus will begin to function normally, and so he is still in diapers. Because the twins are too, it's a major expense for the family.
Although VATER syndrome is not thought to be hereditary, and the twins were thoroughly checked after birth, they both have problems with esophagal reflux as Andrew did, and Kiersten has speech problems like Andrew's. Her therapy is not covered by insurance, but is paid out of the Donahues' pockets.
All of the other children have shown some emotional strain from being separated from Ami during Andrew's illnesses, she said. Many of his operations have been performed at Duke University, and she is often gone for weeks at a time.
But all in all, life is looking up for Andrew. When he started pre-school at the age of 2, Ami said she worried about him riding the bus alone, but he seems to have no problem with it.
Because of the tube in his back and his other problems, Ami tries to discourage his rough play with Bradley, but "he does it anyway," she said. In fact, his only problem seems to be his short stature. He is very small for his age, she said, and sometimes has trouble doing things he wants to do.
Andrew has "good days and bad days," his mother said. Sometimes he goes to the doctor several times a week, and at other times he goes just a few times a month. He has had two revisions of his rectum since the original surgery, and is facing more surgery on his spine in March.
Andrew is so used to doctors, Amy said, that "he just sits there and lets them check him over. He does what he's supposed to do."
Except for his speech problems, Andrew's development is not very far behind. In fact, he is doing so well that next year, he may not qualify for his special pre-school, but may be enrolled in a regular class. The only problem, Ami said, is that because he is still in diapers, he may be put in a class with younger children, which might further delay his development.
Ami Donahue said her son "doesn't know he's different. He doesn't let anything get in his way. He has such determination and life in him, it blows my mind."
by CNB