In the heart of Pennsylvania's farm country sits the Clinic for Special Children, where medical specialist Holmes Morton dedicates himself to diagnosing and treating inherited diseases among the Amish and Mennonites--illnesses that, until he came along, often led to brain damage and death.
Holmes Morton steps gingerly around the cowpies in a large white barn toward three men huddling over a broken gutter. Morton, sporting his characteristic bow tie, is solidly built, with a bushy moustache and sandy blond hair just getting its first gray specks. Two dogs yip at his feet. "I brought some medicine for John," he says, pulling out a bottle of pills from his worn doctor's bag. "How's he doing?"
"He's doing all right," says a lanky young farmer with a black beard, fedora, and black trousers with suspenders. A horse clip-clops up to the barn pulling a buggy, from which a barefoot woman in a long dark cotton dress alights. It's a woman we will call Ruth Stolzfus (this and some other patient names have been changed), the young farmer's wife, who carries her year-old son John on her hip. In the July heat, John wears only a diaper and short-sleeved shirt. His limbs look wrong for his age--thin and wrenlike, instead of the rounded, doughy-looking ones that healthy babies have.
The child has an inherited disease called Bartter's syndrome, which in his case is probably caused by a defect in the kidney's ability to transport chloride and calcium. Babies like John who have the syndrome suffer from poor appetite, lethargy, muscle weakness, and a peculiar eczema-type rash most prominent on the face and scalp. The Amish form of Bartter's appears to cause cysts to form on the kidneys, which, in adulthood, can bring on kidney failure.
John is losing potassium as a result of his illness, and Morton has prescribed potassium supplements for him--but they're not working as they should. "The more potassium I give him, the more comes out," Morton explains to the boy's parents. "It's like a sink with the drain open. His kidneys just can't hold onto potassium." Morton holds out a vial. "This is the only drug I've found that helps," he says. "The only problem is, it costs a lot. That's why I was holding off on using it." He shows the couple a chart listing urine potassium levels for various drug treatments tried on Bartter's syndrome patients. The levels are sky high except for one patient taking the drug Morton is holding.
John's parents nod. They know the drug is an experiment, but they also know that Morton's experiments seem to work.
Before Morton turns to leave, he consults the family patriarch. "What do you think of your grandson?" he asks a white-bearded fellow who's been listening to their conversation. The old man's suspenders circumscribe his paunch like metal bands on a barrel.
"He's skinny," replies the grandfather. "But his eyes look sharper than they used to, don't you think?"
Morton looks into John's blue eyes. "Yes," he agrees, and walks out of the barn, past a tidy row of pink petunias and a line hung with this morning's wash.
Lancaster County, Pennsylvania, is a lush land. Its rolling hills are known as the "Garden Spot of the Country," the most fertile non-irrigated land in the United States, possibly in the world. At midsummer, corn fields ripple in the wind like green estuaries. Well-kept barns and silos dot the landscape, and teams of horses pull wagons through fields of hay, corn, and tobacco.
This is a land steeped in old values--family, farm, and particularly religion. Churches abound. Religious programming dominates the radio, and placards warn of life without Jesus: "If more people walked the straight and narrow path, it wouldn't be so thin." Most visible of the religious groups are those called the Plain People.
These are the Amish and Mennonites, groups that lead a simple life out of religious conviction. The Amish do not use electricity, automobiles, or services like health insurance or Social Security, preferring instead to help their own; most send their children to private Amish schools. Mostly farmers, they work with mules or horses, drive horses and buggies, and wear plain, modest clothing, in some communities even rejecting buttons. Men wear broad-brimmed hats, and women cover their heads with organdy caps. Mennonites generally accept modern conveniences, but many of them still reject the trappings of materialism and popular culture. Pacifists by religion, both Amish and Mennonites apply for conscientious objector status during wartime. They reject wealth, power, and social status, instead striving to get closer to God by minimizing excess and anything that suggests pride.
But the price of a simple life can be high. The Amish in Lancaster County are descendants of about 200 Swiss Anabaptists who emigrated in the mid- 1700s (other groups of Amish settled elsewhere in Pennsylvania and other states). The Amish church forbids marriage outside the order and few outsiders have joined, so the community has been essentially a closed genetic population for more than 12 generations. Thus, intermarriage has brought to the fore certain genetic mutations that were present in the initial genetic pool (as they are in any population), making the Amish host to several inherited disorders. These mostly stem from recessive traits and include forms of dwarfism and mental retardation, as well as the diseases that interest pediatrician Holmes Morton--a collection of treatable metabolic disorders including Bartter's. The Amish have twice the risk for certain diseases than people in the general population. The Mennonites have also passed down particular genetic diseases, including maple syrup urine disease, so named because patients' urine and earwax contain a metabolite that smells like maple syrup. The disease can cause irreversible brain damage in days; if untreated, it claims the lives of infants within the first week of life.
"I juggle about 50 different disorders like this," explains Morton, an instructor in pediatrics at Hopkins, as he bounces through the Lancaster countryside in his Jeep following his visit to the Stolzfus family. "Most of them are poorly defined. It really is experimental medicine to figure out what to do. It's all a learning experience."
Fortunately, Morton has some solutions. He and his mentor, Richard Kelley, an associate professor of pediatrics at Hopkins and an authority on metabolic disease, have advanced life-saving therapies for the two major inherited diseases of their patients: maple syrup urine disease in the Mennonites and glutaric aciduria type I in the Amish, a devastating disease that can strike suddenly, precipitated by fasting or by minor childhood illnesses like colds, chicken pox, or flu. Untreated, the disorder causes damage to two nerve clusters in the brain that are involved in controlling posture and movement. Both diseases stem from an inability to metabolize protein properly. The relatively simple therapies require patients to adhere to a diet that restricts protein intake, and to receive immediate medical care when ill.
Due largely to the diet and other interventions, Morton says he can now treat about 80 percent of his patients. He has also established screening programs for the most common of the diseases; he now screens 95 percent of Amish newborns in Lancaster County for glutaric aciduria. Currently, Morton and Kelley are working out genetic tests to identify those adults who risk passing on genes for maple syrup urine disease or for another metabolic disease prevalent in the Mennonites, medium-chain acyl-coenzyme A dehydrogenase deficiency (MCADD). This disorder had previously been misdiagnosed as Reye's syndrome or as sudden infant death syndrome.
In 1990, Morton, his wife Caroline, Kelley, and local residents established the Clinic for Special Children, in Strasburg, Pennsylvania. Their center is dedicated to helping children afflicted with inherited disorders of metabolism, particularly among the Amish and Mennonites.
The clinic's staff is small. Morton is the director and only full-time physician. He sees patients to treat problems arising from their diseases and to provide general medical care. He also runs diagnostic tests and conducts research in the laboratory. And, when need be, he says, "I mow grass, take out the trash, use the scythe and weed eater, and plant flowers." Caroline Morton balances the books and produces a quarterly newsletter. Part-time nurse practitioner Debbie Kennedy immunizes patients and does follow-up housecalls two days each week. And once or twice a month, Kelley, an ace diagnostician, comes in to diagnose the most elusive cases.
For his work among the Amish and Mennonites, last fall Morton was awarded the Albert Schweitzer Prize for Humanitarianism, an honor administered by Hopkins on behalf of the Alexander von Humboldt Foundation. The annual award has gone to a string of notables including former president Jimmy Carter and former surgeon general C. Everett Koop.
The Mortons' life essentially revolves around the clinic and the communities it serves. Their three children, ages 8, 10, and 12, often work and play in the clinic. Because of the nature of the diseases, Morton spends an hour or more with each patient, often works nights and weekends, and frequently pays housecalls. Caroline Morton says the family hasn't had a vacation together in 10 years.
The Mortons from time to time find themselves explaining the Amish and Mennonite cultures to outsiders, who firstly query whether Amish customs allow for modern medical technology. "Proscriptions against things modern don't include modern medicine," explains Caroline Morton, a gentle, articulate woman.
However, she says, "there are a lot of cultural barriers that affect how quickly people get to care and how medical expenses are taken care of." For example, since the Amish don't drive cars, to get to a clinic or hospital they must hire a driver, or make the long trip by horse and buggy (which is one reason it's essential he make housecalls, says Morton). Many in the community are skeptical of the high cost of hospital medical care. (The Amish and many Mennonite groups are used to paying for their own health care. The Amish self-insure through a system called Amish AID, or through alms collected by the church. A family typically pays $100 a month.) "It's not religious reluctances," says Caroline Morton. "It's more of a practical reluctance."
Part of the reason Morton's regimes for maple syrup urine disease and glutaric aciduria have been so successful is that they do not cost a lot. Morton has done the economics. Before he came along, he says, it was not unusual for a family to spend its life savings on treatment that was often futile. For example, Morton cites a 1985 Canadian study showing that newly diagnosed newborns with maple syrup urine disease were hospitalized an average of two months. In follow-up, the children were rehospitalized because of poor metabolic control for an average of 19 days per patient per year. Hospital bills of $200,000 or more were not unheard of.
Treatment for maple syrup urine disease existed back then, says Kelley. "However, compared to what Holmes does now, it was relatively primitive." Morton's patients follow a low-protein diet and have daily home urine testing that serves as an early warning sign of an impending metabolic crisis. The test is analogous to the one diabetics use to monitor their glucose levels.
Of the 14 patients with the disease that Morton has diagnosed as infants over the last four years, more than half were not hospitalized during the newborn period. For those hospitalized, the average length of stay was four days. In follow-up of 32 patients with the disease, who range in age from 1 to 28 years, the rate of hospitalization for metabolic illness is less than one day per patient per year. "The clinic's total yearly budget is justified by the care of 32 children with maple syrup urine disease," says Morton. "The payback for preventive care is immediate."
To see Morton's success, you have only to step inside the Clinic for Special Children, a solid, two-story timber structure in the middle of an Amish farm. It was built by Amish and Mennonite people who used post-and-beam construction, and it has a slate roof that was salvaged from a 140-year-old barn. Hitching posts stand in the parking lot alongside spaces for cars. The solidity of the building "contributes to the idea that the work being done at the clinic will last," Morton has said. The atmosphere is informal. Rebecca Huyard, an Amish woman who runs the office and helps to educate patients and their families about the illnesses, prefers to announce phone calls by shouting to Morton at the other end of the building. Patients who arrive at lunchtime are invited to have a bite of food.
Sitting on his mother's lap in an examining room, 8-month-old Matthew Lapp eyes Morton warily. Last night he had a mild fever, which is down today, but Morton takes no chances. This child has glutaric aciduria type I, and even a mild illness can permanently injure his brain, paralyze him, or worse. His older brother died from the disease. Morton checks Matthew's reflexes, examines his throat and ears, and asks his mother, Ida, numerous questions. He tells her to double the child's dose of riboflavin (a B vitamin that helps stabilize the disease) and to give him a cough medicine containing dextramethoraphan. The drug appears to protect glutaric aciduria patients from brain injury during fevers and other illnesses, when they are most vulnerable. Despite last night's fever, Matthew is a roly-poly little Buddha, alert and healthy and progressing in his development.
Alvin Miller is another story. Alvin, age 9, is the kind of child who draws your attention even as you try not to stare. Also a glutaric aciduria patient, he was born before Morton started caring for Amish children. Now, on a braided rug in the warmly lit waiting room, he plays with toy farm animals. Occasionally, his gangly arms and legs flinch and his head wobbles. In another room, as Morton shows Alvin's mother and a visitor brain images from some of his patients, Alvin drags himself by his elbows across the slick wooden floor, wanting to see, and repeats his one sound, "Aaaah." After Morton finishes talking, he pulls Alvin up and holds him under the armpits. "How are you walking?" he asks. Alvin slides down like a rag doll.
Children with glutaric aciduria, which occurs in as many as one out of 200 Amish, start out life healthy, but are at risk for permanent neurological damage when a common illness strikes. During any illness, especially when a person eats less, the body starts breaking down muscle proteins into component amino acids, which are broken down into metabolites like glutaric acid, which are further broken down into water and carbon dioxide.
This muscle breakdown transpires in everyone; it's why we get aches and pains with flu. Patients with glutaric aciduria, however, lack the enzyme that degrades glutaric acid. Harmful levels of the toxic chemical build up in the bloodstream and patients suffer "acidosis"--literally too much acid in the blood and body tissues. Morton and neurologist Michael Johnston, of Hopkins's Kennedy-Krieger Institute, theorize that a by-product of glutaric acid targets a brain region called the caudate nucleus, which coordinates movement and is also damaged in Huntington's chorea. Untreated patients suffer seizures and brain damage. The body actually injures itself, irreversibly, explains Morton. He refers to such an episode as the time of a patient's "injury." The worst thing is that permanent injury can occur in a matter of hours.
Before Morton came along, kids with the disease went undiagnosed or were diagnosed as having cerebral palsy. (Morton believes that glutaric aciduria may account for many cases diagnosed as cerebral palsy in the general population.) Morton now spots the disease in his patients by looking for excess glutaric acid in the urine or blood. He restricts the amount of protein they eat, which reduces their glutaric acid levels. Perhaps most significantly, says Kelley, when patients are ill and at high risk of injury, "Holmes pulls out all the stops." Morton makes sure the patients get enough to eat so that they don't break down muscle protein, and he encourages them to drink plenty of fluids and bicarbonate of soda to prevent dehydration. If they are severely ill, he has them hospitalized and given a variety of medications to prevent brain injury.
But these discoveries came too late for Alvin. Sitting in one of the waiting area's handmade wooden chairs, his mother, Susan Miller, clasps a coffee cup and watches her son playing on the floor. Miller bore seven children, including five "special children" like Alvin. She lost two of those. She remembers exactly when Alvin and each of the others sustained their injuries.
When he was 18 months old, Alvin was walking and learning to say his first phrases, Miller says. Then, one day, Alvin developed a common cold and he fell asleep while she was taking him to a doctor's office. "When he woke up, he had lost all muscle control," she says quietly. "Nothing was left. He couldn't talk. Even eating was hard."
Doctors at a local hospital could not diagnose the problem and suggested she take Alvin to Hopkins. But Miller and her husband, Amos, had already taken four children to assorted specialists and come back with no diagnosis. She told the doctors, "I want to go home and accept him as he is."
At home, Alvin got worse. His limbs spasmed constantly. He cried a lot. He had so much trouble eating that Miller sometimes had to force-feed him. "It was tiring for everybody," she says.
Then one day back in 1988, a young man with a sincere, concerned face knocked on her door. "I am Dr. Morton, and I think I have found something that may help your children," he said.
"Amos said he was probably a salesman," recalls Miller. The couple was wary but let him in.
Morton, then a research fellow in metabolic disease at the Children's Hospital in Philadelphia, told the Millers he believed Alvin and the family's other sick children had glutaric aciduria type I, a rare disease until then reported in only a dozen cases. "When he saw Alvin he was just sure," says Susan Miller. "It seemed wonderful, if it was possible."
Morton collected urine specimens from all family members and took them back to the lab, where he confirmed his diagnosis. Alvin and the Millers' other special children had abnormal levels of glutaric acid.
Alvin was actually Morton's second case of glutaric aciduria. The first was Daniel Lapp, Matthew's older brother, who died last year. It was Daniel's parents, Ida and John, who had told Morton about Alvin. Now, having found two cases, Morton was sure there must be more, so he set off, going from farm to farm in search of other children with glutaric aciduria.
For Alvin and other older children diagnosed after their injuries, it was too late to repair the damage. Nevertheless, the low-protein diet has appeared to do some good. Alvin, for one, is much calmer than he used to be. He is happier, can concentrate on activities, and eats better. He uses a wheelchair and communicates through a form of sign language and a computerized sound board. For Matthew and others recently diagnosed, there's the possibility of a normal life. "It's a treatable disease," says Richard Kelley. "So we need to know who is at risk during the first few days of life."
Even after the injury, emphasizes Morton, "It is treatable, in the same sense as congenital heart disease, seizures, and many other serious illnesses. With adequate care, we can improve the quality of life of each affected child."
Morton says his rapport with people like Miller and his willingness to get involved are one reason he's succeeded at helping the Amish and Mennonites. People remember that before he arrived, they had to go to Baltimore or Philadelphia for help. That's not good enough
for children with diseases like maple syrup urine disease who can get sick and die within hours. "The only reason they have any trust in me is that I go out and see them in the middle of the night," Morton says. "They know the clinic is not a trailer that I'm going to haul away. And I will argue with people who bungle a case, and they know I will."
Those on the receiving end would not call him saintly in this respect. Morton can be easily riled. Colleagues have even said that he leaves no room for other ways than his own of doing things. In the presence of his patients, however, Morton's hard edges melt away into gentle compassion.
Morton also respects his clients' medical opinions. One day after examining a baby girl with an inherited condition related to glutaric aciduria type I, Morton consults with Susan Miller. "What did you think when you held that baby? Did she feel like one of your children?" he asks her.
"She's raised five children with this disease, and she's been caring for them for 20 years," Morton explains. "She won't tell you the gene sequence for glutaric aciduria, but she can tell how those children compare to hers."
Morton says he has learned a good deal from caring for the Millers and other Amish, and from attending their corn roasts, weddings, and funerals. He can speak eloquently about some of the things he's learned, as he did last year at the 125th anniversary of Boston Children's Hospital, when he described visiting a family shortly after their young son had died from a still undescribed disorder.
"From the doorway I saw that the harsh white light from a lantern above the bed made the hands and face of the dead boy cold blue-white," Morton told the audience. "Bright silver light flashed from new coins placed over his eyes. But then I saw that the lantern light was softened in colors of the quilt gathered around him, and the light was golden on his hair and on the hair of the children who played quietly on the end of his bed."
Morton said he talked to the family about how hard it is to care for children with diseases no one knows how to treat--and that each failure makes him try all the more.The boy's grandfather responded, "We will be glad if you can learn to help these children, but such children will always be with us. They are God's gifts. They are important to all of us. Special children teach a family to love. They teach a family how to help others and how to accept the help of others."
Then, Morton recalled, "I understood that the gathering in the room was not only a ceremony about death and life after death, but was the means by which the family would both endure and be strengthened by the loss of a child. That was the boy's gift to his family and to all of us who knew him."
Independent as the Plain People are, Holmes Morton is as much so. Throughout his life, he has gone against the grain.
Morton grew up in Fayetteville, West Virginia, a rural town of 2,000. As a teen he attended a small private school in Lynchburg, Virginia, the Virginia Episcopal School. "I didn't study in the same way other people do--still don't," he recalls. So rather than waste time and money, he dropped out. (He only received a degree--an honorary one--from his high school this past spring.)
After becoming licensed by the Merchant Marine, Morton worked as a wiper, engineman, and boilerman for two years on ships on the Great Lakes and earned his G.E.D. (general education diploma). Drafted to serve in the Vietnam war, he worked for four years as a boilerman in the Navy. But he kept studying. He took all sorts of correspondence courses, favoring literature, especially works by fellow Southerner William Faulkner.
Then Morton discovered an academic program that he could tolerate: an individualized degree program at Trinity College, in Hartford, Connecticut, that allowed students to do independent projects for two years rather than attend classes. There he became engrossed in the study of biology and medicine, reaping academic honors in biology and psychology.
During vacations back home he met another native West Virginian, Caroline Smith. Both were interested in helping communities and in the health care field. Caroline, in fact, had helped to run Red Cross programs in Vietnam. They were married in 1979. That same year Morton entered Harvard Medical School, he recalls, "fully intending to pursue a career in academic medicine."
During his residency in pediatrics at Children's Hospital in Boston, Morton began corresponding with Richard Kelley in Philadelphia about metabolic cases. Morton decided to join Kelley in his work, so he accepted a fellowship in inherited metabolic disease at Children's Hospital in Philadelphia. There he encountered his first cases of maple syrup urine disease and other rare metabolic disorders. Fascinated by the diseases and the cultures that carried them, he and Kelley started looking for ways to improve the treatment for these patients.
Kelley then came to Hopkins's Kennedy-Krieger Institute, and in 1988 he invited Morton to work in his lab. During the course of their work, Morton identified 17 Amish children with glutaric aciduria, all of whom had little or no medical care. Preliminary studies showed that an additional 25 to 50 children would be born with the disorder over the next 10 years--and that without treatment or adequate care, 95 percent would be disabled by the disease; 25 percent would die by age 5. Convinced that brain injury was preventable, Morton and Kelley decided to apply for an NIH grant that would enable them to improve dietary therapy for these patients.
For the next year, Morton traveled back and forth, writing the grant proposal at Hopkins, visiting patients in Lancaster, and moonlighting in neonatal intensive care units at hospitals in Bryn Mawr and Harrisburg to pay the family's bills.
The grant was rejected.
In retrospect, the Mortons now say that was the best thing that could have happened. "Grants really didn't address the problem," says Morton, "because they require you to strip away the service parts," like figuring out better ways to care for patients. "A grant is gone in three to five years, but these kids are sick for a lifetime."
Morton had to decide what to do next. If he opted to stay on at Kennedy-Krieger, he would have to give up his work on glutaric aciduria. So, unwilling to turn his back on the Amish and Mennonite communities in Lancaster, he and Caroline decided to set up a nonprofit clinic there. The decision, says Caroline Morton "was so obvious. The question was just how to do it." Who would fund it?
Neither the Amish nor the Mennonite communities could support the upfront cost of the building and equipment, so in August 1989, the Mortons gave up on the idea of a clinic. Instead they borrowed money to set up a pediatric practice with a laboratory to diagnose and treat metabolic diseases.
Then came the big breakthrough: an event some people would call a miracle. A Wall Street Journal reporter learned of the Mortons' endeavor, and in September 1989, wrote a sympathetic article about it, specifically mentioning that the clinic had need of an $80,000 Hewlett-Packard mass spectrometer for diagnosing disease. To everyone's surprise, hundreds of readers sent in contributions, enough money to start up the clinic. The Hewlett-Packard Company donated a mass spectrometer.
On November 17, 1990, Amish and Mennonite farmers had a "clinic-raising" on the land of a farmer whose granddaughter Morton had treated for glutaric aciduria. Five months later, the Clinic for Special Children was open for business.
In his speech last year at Boston Children's Hospital, the outspoken Morton talked of an 8-year-old Mennonite girl with maple syrup urine disease who died when he was a fellow at Children's Hospital in Philadelphia. After the child died, said Morton, her doctors only discussed intensive care that could help these children when in critical condition. No one pondered how they could have prevented the crisis, or how to monitor such children and prevent critical episodes in the first place.
"There were few economic or academic incentives," Morton told the gathering, "for regional university hospitals to establish a local clinic and hospital service in Lancaster County that would make their own specialty services less necessary, make shortcomings of those services so apparent, and make children with maple syrup urine disease and other interesting genetic diseases less available as subjects for grant proposals. In this sense the economic and academic goals of university hospitals can be at odds with the care of children with interesting illnesses.
"I know that studies of the genetic diseases of the Amish and Mennonite people have provided important knowledge," said Morton, "but I also know that some of the work with the Amish and Mennonite people of Lancaster County done by teams of people from universities has amounted to little more than medical tourism. Too often these teams of physicians, students, and blood drawers were disinterested in the health care needs of those whose genetic diseases were studied. This is a harsh judgment, but it is true, and the Plain People know this."
Stanton Segal, director of biochemical development and molecular diseases at Children's Hospital in Philadelphia, had been Morton's adviser when he was a fellow there. "Morton wanted to do things on his own and in his own way," Segal responds. "I think what he has done is great in terms of this handful of patients. But we couldn't possibly do it. I have to go out and get grants and do everything people have to do in an academic medical route."
Similarly, colleagues have said that Morton is jeopardizing his academic and scientific contributions by stepping outside the conventional path. While he has an appointment at Hopkins, lectures frequently around the country, and also holds conferences on metabolic disease at the clinic, Morton has no academic career. What's more, say critics, he has not published his findings and observations, which would allow them to be scrutinized and evaluated by his peers.
Morton says that he doesn't aspire to an academic career. "We feel so fortunate to have this work to do," says Caroline Morton. "I can't think Holmes would find any academic position as fulfilling." As for his scientific work, he says he is able to do as much science (if not more) than he could at an academic institution, where he would have to write grants and focus on sticking to the outlines of funded work. "Grants and publications are not more important to me than the children I care for," he says. "I will publish my work when I am satisfied that my conclusions are valid and when I have time."
The Mortons sometimes receive letters suggesting that to avoid perpetuating their genetic diseases, the Amish should marry outside the order or not have children. Morton bristles at such advice. "We don't ask blacks not to marry blacks, or women over 35 not to have children," he says, even though 1 out of 10 American blacks carries the trait for sickle cell disease, and a pregnant 35-year-old has a 1-in-270 chance of having a child with Down syndrome.
"There are advantages to these cultures that keep people in them that are sometimes hard for outsiders to understand," he says, looking out the clinic's front window. "There's no alcoholism, no divorce, no unemployment." Unconsciously tidying pamphlets on a table, he pauses a moment to collect his thoughts.
"You know, sometimes I think they're right," he says. After knowing the Plain People long enough, their beliefs and customs start to make some sense, including the concept that these children can be a gift. "In this culture," says Morton, "these children are often the origin of compassionate acts. Many people who have them who aren't compassionate to begin with become that way." He turns from the window. Outside the setting sun melts into a cornfield.
"These children give meaning to my work," Morton said in accepting the Schweitzer Prize. "They're inspiring. They give me a sense of place and of purpose. Special children shape these cultures in important ways. We should not underestimate the value of their lives. We should not assume we'd be better off without them. They force us to see the best of ourselves."
Melissa Hendricks is the magazine's senior science writer.
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