Benjamin Maresco’s family lived in a quiet suburban Midwestern neighborhood. The Marescos sent their children to private schools, attended Mass each week, and participated in Little League sports. Theirs was a comfortable, spacious two-story home that housed children, playthings, hopes, and ambitions. Traditions were time-honored and holidays were ritualized. In this house, birthday cakes, Halloween costumes, and memories were homemade. Yesterday’s artwork and today’s sticky fingerprints decorated the refrigerator, and fresh-baked bread sprang from the oven on cue.

Month after month, night after night, mother and child survived in their sleepless prison.

Ben was born into the family on a sunny Friday afternoon in May taking his position as the fourth of five children. His birth was a celebration, planned and orchestrated to take place at home. He was welcomed into the world by his parents, his siblings, and a handful of trusted friends and caretakers.

Benjamin shared a kinship with his siblings, who adored, indulged, and pampered him. His older brother, Rob, was serious, conscientious, and competitive—in contrast to Wendy, his older sister, who was artistic, creative, and environmental. His closest sibling, a sister two and a half years his senior, was his best friend, confidante, and constant companion. Stephanie’s gifts were devotion, spontaneity, and an intuitive grasp of the universe.

Edward Maresco took life seriously, worked hard to support his family in their uppermiddle-class lifestyle, and left the logistics of family life to his spouse. He was opinionated, lived and breathed politics, and enjoyed a few cold beers with his evening newspaper.

Edward’s wife, Andrea, excelled in the domestic and the maternal. Her home and children were an extension of her own identity. She was idealistic, challenged the system when it affected the well-being of her offspring, and trusted in God. Her contribution to the world was healthy, well-developed human beings.

Benjamin received the best life had to offer—a loving home, financial security, and parenting perfected through eleven years of previous trial and error. His body was nourished through whole, natural foods, and his mental, emotional, and spiritual needs were given the same care and attention. By nature he was a happy, playful, and spirited child endowed with the seed of unlimited potential that blesses the very young.

In his second year, Benjamin developed a subtle and illusive breathing disorder. What began in his eighteenth month as mild snoring progressed over the course of the next year into a full-blown apnea triggered with the onset of sleep. In contrast to the waking child, who appeared healthy, active, and normal, the sleeping child struggled for each and every breath, choked and vomited, and stopped breathing several times a night as if an airlock in his throat had mysteriously closed.

His frantic mother took him from one doctor to the next with no diagnosis and no results. X-rays showed no blockage and drugs brought no relief. Doctors who saw Benjamin only in a waking state discounted his mother’s narrative of the transformation that took place at night. She was patronized, belittled, discredited, and passed along to the next in line for medical referral. Professionals talked croup, asthma, tonsillitis, and sensitivity to dust. An out-of-state physician suggested a local pulmonary specialist, but referrals by local doctors were refused. Benjamin was caught in political power plays, quarrels, and indecision.

Benjamin’s illness stressed the family, irritated his father, worried his siblings, and exhausted his mother. Between consultations, Andrea Maresco searched for her own answers, completely restructured Benjamin’s diet, tested her tiny charge for ingested and airborne allergens, experimented with nutritional and homeopathic remedies, and scoured book after book on a wide range of topics from alternative therapies to faith healing.

Each night she tucked her two-year-old into the twin bed positioned next to her own. She watched as he slept, and she listened. As he drifted off to sleep, Ben’s breathing became labored, his color paled, and he struggled with each breath. Some nights his mother could prop him up to bring relief. Other nights she sat for hours and held him upright to partially alleviate his distress. Ben routinely choked and vomited, ruining bedclothes on two beds and requiring a change of night clothes for both of them. Often his mother woke to find Ben sitting upright in bed sound asleep, listing back and forth—leaning, correcting, leaning, correcting.

Occasionally his mother dozed, waking the instant Benjamin’s breathing pattern changed. Five or six times a night, Benjamin’s windpipe collapsed, refusing to allow air to pass in or out. The sudden silence woke her instantly, and within moments the lack of oxygen in Ben’s lungs woke him, as well, freeing him from suffocation. Many times he would awaken in terror, eyes wide, body screaming a soundless scream devoid of breath to give it voice. In their terror, mother and child clung to each other till his tiny body made the transition into wakefulness and he finally caught his breath. Month after month, night after night, mother and child survived in their sleepless prison. At the first hint of silence, she woke. At the first hint of oxygen deprivation, he woke.

But one fateful night she didn’t wake up—and neither did he.