Nobody thought about dying when Sam Anderson was born in 1989. True, Sam was two months premature. But after some time in the pediatric intensive-care unit he went home. He looked like any healthy baby boy. Then, sometime between six months and a year, he began to miss developmental milestones like sitting and crawling. At the age of 1, he was diagnosed with cerebral palsy, a neuromuscular disorder that occurs in about three births out of 1,000. Though his mobility was limited, Sam attended school and was able to maneuver across a room using a walker. Then, two years ago, he suddenly began losing more muscle control, and Melissa and Marion Anderson began to suspect that CP was not all they were dealing with. “Doctors said it was a complication of CP. We said OK. We wanted to be able to say that,” Marion Anderson remembers. “But we knew that CP is not progressive by nature.” That was the beginning. Since then, Marion says, “We’ve been in an ongoing fight with the medical establishment, in terms of getting the diagnosis right. We’ve got a collection of medical records the size of a Sears catalog.” After inconclusive consultations with doctors in Richmond and Charleston, S.C., the Andersons finally got a hint regarding Sam’s illness. An Atlanta physician suspected mitochondrial disorder, a degenerative neuromuscular disease that can lie dormant for a lifetime or end a life in a matter of weeks. Poor growth, loss of motor control, muscle weakness, seizures and respiratory disorders are among its symptoms. Cells lose their energy, whole body systems begin to fail, and the life of the person affected can be threatened. The Atlanta doctor recommended a muscle biopsy, considered conclusive proof of the disorder. But such biopsies are painfully slow to analyze – it took a year to get the results back. During that year, Sam’s health grew worse. He suffered from an erratic heartbeat, sleep apnea and enormous pain. “We had to pull him out of school,” Marion says, shaking his head. “He’s of above-average intelligence and scored two grades above third grade when he was tested.” They continued to visit doctors, including a neurologist who ultimately compounded their misery. “We told him we had a biopsy pending, but he said to us, adamantly, ‘This child absolutely does not have mitochondrial disorder.'” Marion, who admits he is still bitter, now calls the doctor who gave them that slim thread of hope egotistical. He can barely speak of him. The biopsy results arrived in the mail on Labor Day weekend of 1999. It was like a doomsday. The diagnosis was mitochondrial disorder. For weeks after, Melissa, a pediatric nurse who understood all too well what the diagnosis meant, waited every day for a letter to come saying that the lab had made a mistake. No letter came. There are babies who die from mitochondrial disorder before they’re 6 weeks old, and there are adults who live to old age with only a stiffness in the legs to show for it. Or, as Marion puts it, “You could go from being a normal 9-year-old to being dead at 13.” The most agonizing part of dealing with Sam’s illness has been that, while it has been diagnosed, there is no treatment for it. “Until they untangle the DNA strands, they’re not going to understand it,” says Marion. He has researched on the Web and made contact with one other Richmond family who has a child with the disease. “Our biggest problem has been with physicians not wanting to accept it,” he says. “It plays into their God-complex; they’re up against something they can’t handle. … It took us a while to get over nobody really knowing about it.” Marion has quit his job with a company that makes exhaust and radiator systems to stay at home with Sam, and Melissa continues to work as a pediatric nurse. Marion’s day at home is unpredictable. “Typical stopped two weeks ago,” he said last month. “Before, I got the girls up at 6:30 a.m. and got them off to school. I woke Melissa up, got Sam up, and dressed and took Melissa to work. Then he played games or listened to his stereo, and I’d sit at the computer – I like to record music and make CDs. That was a great day – when he wasn’t sick. But the last couple of weeks have been a little different. We’ve taken him off the morphine – everything has been an experiment – and we’ve been watching for possible seizures, possible strokes.” As Marion and Melissa discuss their day and Sam’s new throat infection, their fear is palpable. With his cells malfunctioning, even the smallest ailment could be deadly. They discuss the symptoms and tentatively attribute some of his recent symptoms to the infection. The worried tone of their hushed voices makes it clear that Sam’s condition is a guessing game that keeps them frightened and frustrated every day and night of their lives. (Chad Hunt / Style Weekly)Eleven-year-old Sam Anderson has mitochondrial disorder, a degenerative neuromuscular disease that causes cells to lose their energy and body systems to fail. The slightest infection can be life-threatening, so nurse and Noah’s Children volunteer Julia Moylan helps Sam’s parents carefully monitor his condition. Julia Moylan, a registered nurse, spent 33 years at MCV in general pediatrics. She had been retired for a year when a member of Noah’s Children’s board encouraged her to get involved.Last February, the Andersons turned to a hospice for children – a place most kids go to when they’re preparing to die. Four years ago, a kindergarten class at St. Michael’s Episcopal School created a colorful Noah’s Ark collage. Bob Archuleta, a pediatrician, bought it at their school auction. When Archuleta suggested to the children that prints of the collage be made and sold, the kindergartners decided to donate their proceeds to help dying children. Archuleta, inspired, helped establish Noah’s Children in 1997. It is the only licensed nonprofit pediatric hospice in Central Virginia. “And here we are three years and $500,000 later,” he says. He is president of the board of directors and medical director. Noah’s cares for nine or 10 dying children in a given year. While the word often calls up images of a hospital for the dying, hospice actually is more an idea than a place. Hospice workers usually care for people in their homes. The Noah’s team has 10 full-time and part-time employees, plus a multitude of volunteers who give their time both regularly and when special events require extra help. The team works from a Forest Hill Avenue tiny warren of offices that is crammed with copying equipment, desks, a microwave, conference table, files, mini-refrigerator and usually a plate of cookies or candy. Conferences can occur at any moment, and there is a sense of gravity to the voices as they speak on phones. With a $450,000 operating budget to support, Noah’s Children’s development director, Cathy Bos, stays busy. Archuleta concedes that sometimes people complain that the budget is too big for the number of dying children the group works with. But, Archuleta adds, through the illness and bereavement support programs the nonprofit helps as many as 200 people annually. Donations come primarily in the form of individual contributions, Bos says, with some support from civic and religious groups. Some foundations are starting to send money as well, she adds. On Jan. 21, 2001, Noah’s will be the beneficiary of a Richmond Boys Choir concert. Because Noah’s Children was a child’s idea to begin with, Archuleta has helped start an auxiliary program called Kids Helping Kids, a community-based program in which children volunteer to help other children. Archuleta is a firm believer in the idea that participating in community service helps build self-esteem. From the beginning, Noah’s founders’ intent was to serve terminally ill children from the time of diagnosis to the end of life. But laws in Virginia state that a person is not eligible for hospice care until his or her doctor confirms that the person has six months or less to live. Frequently, doctors are unwilling to make that call, and families are understandably reluctant to admit to themselves that they have so little time. In fact, most hospice care is only given in the last 13 days of life. “It’s awfully hard to provide families what they need in such a short period of time,” Archuleta says. “But referrals come late and parents are never going to give up hope.” Just last month, Noah’s Children’s original mission was finally made possible. The group received its pediatric home-health license from the state of Virginia. That paperwork will enable the group to do what they’ve always wanted to do: care for children from diagnosis to death. Now they can provide medical and supportive care for all children up through age 17, specializing in those with life-threatening disorders. “We want to be seen as experts on illness and bereavement,” says Jean Skrincosky, Noah’s Children’s social-work coordinator. A family is ready to make the step to hospice when they are ready to abandon aggressive treatment of the child, Skrincosky explains. They continue to receive nursing care for pain and symptom treatment – palliative care, as it is commonly called — and the hospice team takes a holistic approach, supporting the entire family. “It’s important for everybody to be on the same page – the doctor, family and insurance company,” Skrincosky says. “Then we follow the family’s lead.” Julia Moylan, a registered nurse, usually receives the first call for help as she fields referrals from doctors, insurance case managers, social workers and families. She follows up with patient visits and assesses their needs. Caring for ill children is not new to her. She spent 33 years at MCV in general pediatrics. She had been retired for a year when a member of Noah’s Children’s board encouraged her to get involved with a no-nonsense imperative: “They can use you.” She was drawn to hospice work, she says, because “I thought parents and children could do so much better if they could die at home where they could have the dog around and just a more loving type of environment.” Jump to Part 1, 2,Part 2